International Care: Challenges and Opportunities
Monday February 17, 2020
Families and medical professionals worldwide seek retinoblastoma care at centres offering treatments that are unavailable in their home country. Many families contact WE C Hope for assistance before, during or after such treatment. Abby White explores the challenges they experience and what can be done to help improve outcomes for their children.
* Some names have been changed to protect the identity of individual patient families.
Daisy, at the Toronto Ronald McDonald House, during treatment in Canada.
Families often seek international care at centres of excellence that offer alternatives to enucleation, or for prescribed treatments that are unavailable at home. World Eye Cancer Hope was inspired by two children who received such medical care, giving them hope of life and sight.
Daisy travelled to Toronto when all options to save her last eye in England failed. On returning home, her family financed travel and initial therapy in Canada for Rati, whose cancer had spread outside her eye due to incomplete care in Africa. Rati’s treatment in Botswana was delayed and incomplete due to lack of awareness about retinoblastoma and its appropriate management. Treatment in Canada gave her the best chance of beating the cancer. She was in remission for a year, but sadly died on August 21st 2006.
Approximately 9,000 children are newly affected by retinoblastoma each year around the world. 90% of these new cases occur in low and middle income countries, where access to basic health care services, let alone specialist care, is often limited. Children typically have more advanced cancer at diagnosis in these countries than in high income countries due to lack of awareness about retinoblastoma, and slow referral to specialist care.
Survival is above 95% among the 10% of affected children who live in developed countries. But less than 30% of children are estimated to survive among the 90% of children who live in low and middle income countries.
Most retinoblastoma resources and expertise are located in developed countries. Given the dismal survival in most resource limited countries, it’s no surprise that so many families hope and pray for international treatment when their child is diagnosed with eye cancer.
Why Do Families Seek International Care?
In our experience at WE C Hope, most families who seek care in another country are desperate to avoid recommended surgical removal of the child’s eye. For many children, enucleation offers the only realistic hope of cure, either because the cancer has already grown to a stage that threatens the child’s life, or because eye-saving treatments are unavailable or have failed to destroy the cancer.
Many parents refuse locally available enucleation because they believe it is only advised due to their low socioeconomic status. Distrust of overstretched, underfunded public health care in many countries doesn’t help. Smartphone ownership is burgeoning throughout the developing world, and families are increasingly aware that alternatives to eye removal surgery exist. The growing array of online stories about successful eye salvage treatment make emotive reading for desperate families.
Doctors sometimes advise families to seek care elsewhere, either because they believe an alternative to enucleation is possible, they do not feel confident about treating the cancer, or they simply do not understand the urgency of treatment. Most children with retinoblastoma die in low income countries. Some doctors, or the hospitals at which they work, prefer not to treat children they believe will die – if the child dies, the death will not become a statistic on their record.
Rarely, enucleation surgery is not available or accessible in the child’s home country, and the only life-saving care lies across borders. When a child has cancer in both eyes, some sight might be saved with intensive treatment and close follow up, and international care may be the only sight-saving option.
We know that with prompt, early treatment and close follow up of both eyes, there is a good chance of saving eyes and an excellent chance of saving life. However, advanced cancer inside the eye is a serious threat to life. When follow up care is compromised, the success of initial life and sight saving therapy can quickly unravel and end in tragedy for the child and entire family.
Comparing age and stage of cancer at diagnosis in high income countries and Kenya, we estimate the time from parents first recognizing white pupil to the cancer spreading outside the eye is 6 to 11 months. Removing a child’s eye early is the best treatment to save their life, especially when only one eye is affected.
Conflict arises when only one parent attends hospital visits. Parents who do not talk openly and together with the child’s local doctors are more likely to seek international care than parents who ask the doctor questions and hear first-hand explanation of the need for urgent treatment.
In Zambia, Daniel could not attend hospital with his wife when doctors advised Jennifer that their daughter needed bilateral enucleation to save her life. Horrified by the thought of mutilating twenty-one month old Liseli, he used a nearby internet café to search for an alternative, and was enthused to learn that sight saving treatments could be possible. Overstretched doctors had little time to counsel Liseli’s mother about the risks of delaying care before she returned home full of hope. The couple began saving hard for travel to the American hospital that offered to treat their daughter. But Liseli’s cancer spread before her family had gathered enough money even for flights. She died in terrible pain, one month after her third birthday.
TNM Staging for retinoblastoma, and average age at diagnosis in developed and developing countries, with timeline to extraocular spread.
What Are The Biggest Challenges to Effective Care?
From observation and extensive discussions with families we have supported over more than fifteen years, we identify common challenges to care that influence the short, medium and long term outcome for the child and their family. Broadly, these are:
- the family’s ability to access and understand information about retinoblastoma, and to relate it to their child’s specific situation;
- time delay to start of treatment at the international centre;
- the family’s ability to finance treatment and follow up care;
- poor communication and collaboration between the international centre and local medical team, especially for delivery of follow up care;
- inadequate psychosocial family.support throughout diagnosis, consultation with the international centre, treatment and follow up care.
We also see common-sense interventions that can radically improve the child’s chance of cure, and reduce burdens for their family and for all in their circle of care. Those actions can also help build and strengthen local retinoblastoma expertise to treat and save more children worldwide.
Access to Information
Many families cite online information about eye-saving treatments as a key motivation for seeking therapy in another country. We are frequently contacted by families who include links to family blogs or sensationalized news articles of recently completed “successful” treatment, asking for financial help to access such therapy. I spend much time gathering details about the individual patient, carefully explaining the child’s medical reports and how the situation of the featured child differs, clarifying that a journalist’s use of words such as “cancer-free” and “cured” may not be correct, and the outcome of the featured child may not be known for several more years.
In most instances, the family eventually tells me enucleation has been recommended by local doctors. Some of those professionals are names I recognise, people I know to be very experienced. Sometimes parents attach medical reports that, even in their brevity, highlight the urgent need for surgery. They point to physical features that suggest the cancer is at risk of spreading. Or they describe a tortured delay in diagnosis, which implies the family has no capacity to pay for prompt international travel, let alone treatment and years of follow-up care.
So often I communicate to and fro with a desperate parent, by email, by text, via social media, by telephone or skype, and I have a sense that I am talking them down from a parapet. I know that if they stop talking with their local medical team, if they try to pursue an alternative, the chance that their whole world will unravel is great. They want only the best for their child, but the risk of losing everything they hold dear is huge. I also know it’s inconceivable to most parents that their precious child might die from a growth in the eye that currently causes no pain.
As parents, survivors, health reporters and other commentators, we must all consider global internet access when creating content today. We must choose our words carefully, use language correctly and be mindful that most families seeking an alternative to surgery lack resources to access eye saving therapy. Yes, we must celebrate the progress being made in vision-saving treatments, but we must also continue to acknowledge that removing an eye is vital life-saving care. It is not a bad decision, and it is not a failure. It is the greatest act of love and the very best care a parent can offer their child with retinoblastoma.
Lack Of Counselling About Local Treatment
An international second opinion can help parents make informe decisions, but communication with specialists is often slow. Doctors struggle to evaluate the child’s situation if diagnostic reports provide limited tumour-specific information. Important tests like ultrasound, EUA and brain imaging are often not performed, images are not supplied to parents in a sharable format, and written reports are unavailable or incomplete.
Among 24 families who contacted WE C Hope for support after refusing surgery locally, more than half (14) experienced immediate enucleation at the international centre to which they travelled. Half of those children whose eyes were removed (8) died from cancer that spread due to delayed surgery.
Families rarely feel they receive counselling from the international centre about the urgency of enucleation surgery in such a way that they would be confident accepting locally available and affordable care. Many parents whose children later experience cancer spread beyond the eye express regret for the lack of honest explanation about how this would mutilate their child, and cause such a slow, painful death.
Many families from lower income countries are not used to a culture of asking doctors questions, despite advocating for overseas care. This often leads to misunderstandings and delays. We often find parents lack basic knowledge about the cancer and its various treatments. The information is rarely provided by medical professionals from the hospital in the developed country until the child becomes their patient on-site. So the opportunity is too often missed to educate parents and help them make fully informed decisions about expensive international travel and appropriate care while the child is still curable and the family still financially able to fund vital treatment and follow-up care.
Language barriers often cause confusion while seeking international care. Detailed information may not be available in the mother tongue, while facts are often interpreted and meaning construed in the process of translation. This is especially true when the translator is a relative or friend and unfamiliar with retinoblastoma. The need to protect loved ones and hold on to hope leads us to hear and say what we most desire to hear.
Max was diagnosed with unilateral retinoblastoma in The Ukraine, aged two years old, and doctors recommended enucleation. A British relative contacted us as the family were keen to explore possible international eye-salvage therapy. We set up a teleconference with the British relative, the father at his workplace, the mother at home, our Medical Director (Dr. Brenda Gallie) and a Ukrainian doctor in Toronto serving as translator. This helped the family make informed decisions together and find peace with urgently needed surgery.
We have occasionally witnessed acceptance of child for review and possible treatment following contact between the family and international patient office, and between patient office staff and specialist team. Yet no direct communication has taken place between the family and retinoblastoma specialists.
When Nigerian doctors advised that both of Richard’s eyes be removed, a family friend in England offered to seek an alternative. His family were ecstatic when he was accepted for evaluation in London a week later, even though neither they nor their friend had communicated directly with the specialists. After Richard’s EUA, his parents were crushed to hear the doctors explain that both eyes must indeed be immediately removed as his life was in danger. More worrying yet, they could not afford the cost of surgery in England.
Richard’s family had spent their life savings and borrowed £3,500 to cover the cost of their flights, accommodation and the evaluation in London. They barely had funds remaining to cover the cost of surgery in Nigeria. They contacted WE C Hope at this point and we helped them recover £2,000 from the hospital, due to the lack of communication between family and specialists before Richard’s acceptance. But they were financially devastated, and their child’s life was put at serious risk by delayed treatment.
An international specialist may be the first person the family or advocate contacts with good knowledge of retinoblastoma. Open conversation between parents/advocates and doctors can help both sides clearly understand the circumstances, and make decisions that ensure the child’s safety.
Conversation via email or social media may seem impersonal, but a compassionate, response and detailed information, mindful of the individual family’s circumstances, can help parents make fully informed decisions.
Time Lapse to Treatment
Seeking international medical care is costly for all families, whether from high, middle or low income countries. Treatment begins fastest when it is funded by a government, employer or insurance. Self-funded or fundraised care is often delayed by more than four weeks, and sometimes more than six months.
Families from high income countries who could benefit from government or insurance funds are forced to fundraise when local doctors do not support the child’s treatment in another country. Sometimes this arises from a disagreement about appropriate care. Sometimes, this can only be attributed to a physician’s ego, which undermines the child’s care and psychosocial wellbeing of the family.
All families need official documents to travel and, depending on the country of residence and destination, many families need visas. Countries that offer visa-free entry and visa waiver programs provide the best opportunity for rapid access to care.
Securing travel documents is complex in many countries, and bureaucratic wheels turn slowly. Emergency applications usually cost more and must be made in person – with the child – in a regional or Capital city. Since passports must be submitted with the visa application form, only one visa can be applied for at a time. Requests may be denied for the smallest reason, and the process can be almost impossible if the child has no birth certificate or similar essential documents.
We secured flights with South African Airways for Rati’s father and sisters to join her in Canada before her Bone Marrow Transplant. The donation was confirmed four days before the actual flights, despite my request for at least two weeks’ notice to enable travel documents and onward travel to be arranged. So the family scrambled to secure US transit visas in Gaberone, six hours drive from their home, and 11 hours drive from the airport in Johannesburg. The application was denied as they attached regular passport booth photos, not realising the difference in stipulated photo size. The flights I worked for five months to secure would be lost if documents were not granted the next day (a non-issuing day at the US embassy).
Visas were issued only after feverish networking overnight directly to the US Ambassador in Botswana, thanks to my former housemate and her mother who called on her contacts in Washington D.C. for assistance. Families and charity workers seldom have connections like this, and I will be forever thankful to Phoebe, her mother, and all who played their part in reuniting Rati’s family at such a critical time in her care.
Even when fully in order, visa applications often delay care by more than four weeks for children from developing countries. Families have occasionally reported delays of up-to six months.
An American doctor providing earthquake relief in Haiti discovered a child with unilateral retinoblastoma. She worked very hard for almost four months to secure his entry to the USA. When his eye was removed, doctors discovered the cancer had already spread. He received chemotherapy, proton beam therapy, and exceptional care. Yet enucleation surgery was available in Port au Prince, despite the earthquake’s devastation. Would he have needed intensive therapy after prompt surgery in Haiti?
Logistics of Travel and Living
Treatment begins fastest when the family has relatives near the international hospital, but this doesn’t always equate to a specialist retinoblastoma centre and expert care. Delays are also least when the family is supported by a charity. Charitable support may be advisory, advocacy, logistical, liaison – it does not have to provide financial assistance to be effective.
Many international airlines provide “compassionate rates” for emergency travel, but few families know to ask for these. Some airlines offer donated flight programs for seriously ill children and their parents, but the application process frequently takes 3-6 months – an unacceptable delay to the child’s care.
Few families who contact us have any understanding of how long they expect to be living at the international centre during their child’s care, or how they will finance daily living costs. Parents infrequently ask the question “how long will we be there?”, and this critical information seems rarely to be offered or repeated by doctors or international patient co-ordinators. While it is difficult to predict the course of eye-saving therapy, such knowledge is vital to help a family assess their living needs and options, and budget for the cost.
Many hospitals have local family housing that provides heavily subsidised or free accommodation. However, rooms cannot be booked in advance and are not always immediately available. There may also be a limit to the length of stay allowed, impacting long-stay international families. Generous negotiated “patient rates” may be available at local hotels and long term lodgings, but we have found patient families are often not aware of these options. The cost of housing, food and other daily living expenses mounts up rapidly on top of medical bills, and can quickly become overwhelming when it is not carefully considered and the family is not effectively supported during treatment.
Rati and her family, reunited in Toronto.
Families are rarely fully self-funding, but those from High Income Countries have more capacity to make initial payments and start therapy fast. Fundraising is also easier due to greater childhood cancer awareness; easier access to the media and internet; website creation, social networking, and other skills; more disposable income in the local community; and an established culture of philanthropy. However, residence in a High Income or Upper Middle Income Country does not necessarily mean the family is more able to completely cover the cost of care.
In our experience, most families from lower income countries seek financial support from the international country with little understanding of how to fundraise, and limited public support. Many struggle to gain documents from the local hospital to legitimise their appeal, while the international hospital may not provide an official acceptance letter until a first payment has been received, trapping the family in a dangerous vacuum.
In countries where there is a strong international aid and dependency culture, families are generally unmotivated to fundraise. They mistakenly believe the international hospital, a charity, mission organization or large company will fund the child’s care, occasionally citing such humanitarian efforts covered in the media.
But charities are rarely able to provide such financial support due to the high cost. Funds spent on intensive post-surgery therapy for one child in a high income country due to delayed care could save 30-50 children in their home country. Those same funds can build sustainable programs to help save life and sight for many more children long-term.
Pursuing international care can spell financial ruin for a family who may be relatively comfortable before the diagnosis. Parents may mortgage or sell their homes, other property and businesses to finance care. Children may be removed from school, and money may be borrowed from relatives and friends. A financial plan that seems watertight to a desperate parent seeking a miracle can quickly unravel into a life-threatening morass, and push an entire family into poverty and hopelessness.
Ayesha’s family arrived in London from Kuwait, having no prior contact with the hospital or any retinoblastoma specialist in England. Kuwaiti doctors had recommended her eye be removed five months earlier, but her parents believed this was only because they were poor. Now Ayesha needed urgent surgery for her unilateral cancer. But hospital administrators refused treatment without immediate payment, due to significant outstanding bills of other unrelated Kuwaiti patients. WE C Hope was contacted for assistance, and I liaised with the embassy to secure full funding three days later. However, post-operative pathology showed Ayesha’s cancer had already spread. The embassy refused to pay for intensive therapy, so her brokenhearted family returned home to Kuwait, where we lost contact with them.
Collaborative support can include offering guidence to medical professionals on simple supports for children with retinoblastoma. Here, a doctor holds his hands out to a young patient recovering from her second enucleation. She has been scrared by many invasive procedures and loss of sight. He offers his hands to her, inviting her to make the first physical contact, to reduce her fear and anxiety, help rebuild trust, and give her a sense of control as she sets the pace of the exchange and the procedure to follow.
Collaboration and Follow Up
Following initial eye salvage treatment, children require close follow up care to monitor for signs of regrowth or new tumours. Children with retinoblastoma may experience several years of intermittent tumour growth and therapy, and the smaller the growth is when detected, the more effective and less invasive treatment can be.
Many children respond well to initial treatment at the international centre. But the overall outcome is compromised by poor forward planning and limited follow-up care, and by inadequate communication between international and local centres and between parents and physicians. Globally, children who receive treatment in another country often have a poorer long-term outcome than might be achieved in their home country.
Family’s Understanding of Follow Up Needs
Most families lack information to help them consider the long term medical and financial implications of retinoblastoma care, before committing to international treatment. Focused entirely on immediate treatment, they fail to consider follow up as a vital component of care. Including how long follow up lasts, where it could take place, how much it will cost, and the potential consequences of failing to comply with regular examinations and tests.
We find that many families from lower income countries lack a basic understanding of the need for close long term follow up. This usually equates to a lack of understanding about cancer and how it behaves in comparison to other diseases with which they are more familiar. Many parents believe that “remission” and “cancer-free” means cure, and follow up care is optional.
Financial Capacity to Fund Follow Up Care
Financial capacity to pay for follow up care is a key factor in the child’s long term outcome. We are regularly contacted by families after “successful” treatment at the international centre, who now face a delayed diagnosis of relapse in the child’s salvaged eye. Families from lower income countries typically become engulfed in debt and cannot sustain follow up care, even when they understand its importance.
Children do most well when the family have funding assistance from a government or insurance coverage. In our experience, employer support often constitutes a loan, rendering the family unable to commit to effective follow up care.
Self-funding families usually find that while communities may generously support appeals for help with treatment costs, they struggle to muster support for ongoing follow up care. This challenge is particularly acute when the majority of donated funds for treatment are donated within the international country during the child’s treatment.
In Brazil, Paulo was diagnosed with bilateral retinoblastoma, and his parents refused locally recommended enucleation for the worst affected eye. They travelled to America for care, where Paulo’s eye was immediately removed, and a combination of therapies gave them hope of saving his other eye. They flew home after a year, advised to return every few months for eye exams. But having spent so much on treatment, travel and living, they had little funds remaining to support necessary follow up care. No realistic plan was made to support follow-up care with experienced doctors in Brazil.
Several years later, a large tumour was found in Paulo’s remaining eye during an infrequent eye exam at the international centre, and prompt enucleation was advised. Post-operative pathology showed he needed intensive therapy to save his life – treatment his family could not afford. He returned home to treatment in Brazil, where he died nine months later.
Communication Between Centres
Many families seek international care independently of any local retinoblastoma centre, even when the local centre has advised them to travel internationally. Children have the poorest outcome when no plan is established very early for realistic follow up care. The best outcomes are achieved with solid communication between centres before, during and after international treatment, including shared care and online consultation to support local follow up care.
Families are most often expected to return to the international centre for follow up care, leading to exams as infrequently as once per year immediately following eye salvage therapy. The situation is highly dangerous for children. Preventable relapse is devastating, and an immense waste of resources for the family, supporters, and the treatment team.
In Burundi, Ella Nina was diagnosed at 3 weeks old with bilateral retinoblastoma – a great achievement for a child with no family history and no parent knowledge of the cancer. Her mother’s employer, Oxfam, paid for ophthalmic consultation at a private eye hospital in Kenya, from where she was referred to London for treatment. Her worst affected eye was removed and her other eye was treated with plaque and focal therapy. Ella and her mother returned to Burundi full of hope, but her follow up care was compromised because her initial treatment had been funded by a loan from Oxfam, that her parents now had to repay. The financial constraints resulted in eye exams less than once per year at the private hospital in Nairobi.
When Ella was six years old, her remaining eye was found to be full of cancer. Friends in London contacted us at this point as they rallied support for more treatment. Following an accelerated course of radiotherapy, Ella again returned home, and we helped arrange follow up with the retinoblastoma team in Nairobi. When a cataract developed in Ella’s eye five months after radiotherapy, Kenyan doctors advised her eye be removed due to the risk of active tumour that couldn’t be clearly seen, and the awareness that Ella’s circumstances made follow up care challenging. Her London doctor said this was not necessary and her parents, who distrusted the public hospital doctors, refused. Two years later, Ella returned to our Kenyan team with extensive metastases that could have been prevented by that simple surgery.
Children who receive international eye salvage treatment often struggle to find local follow up when doctors in their home country have no experience of providing care after such treatment. We observe that local doctors are more confident in delivering follow up care with ongoing support from the international centre. This partnership also creates opportunities for broader transfer of knowledge and skills in retinoblastoma care that can benefit other children in the community.
Sera was diagnosed with bilateral retinoblastoma in Fiji, where eye removal surgery is the only treatment available. Her father sacrificed his superannuation to fund her eye-salvage treatment in Australia. Sera went almost two years with no follow up as local doctors were reluctant to examine her saved eye, and her parents could not fund international care. When WE C Hope became involved, I helped set up an eye exam back in Australia. I also connected with a local doctor through a chance meeting in Kenya (small world), and the Fijian and Australian doctors agreed to collaborate for Sera’s local follow up care as much as possible. Fortunately, Sera had no recurrence during the long gaps between care, and she is doing well today with one eye saved. Her story could have been very different.
Most families cannot afford to travel as a complete family unit to international care, regardless of their socioeconomic status. Funds may only support travel for one parent, or a parent may need to continue working to fund treatment. Separation puts stress on parent and child at the international centre, and those at home, and erodes relationships within the family. Separation and isolation is particularly harmful to the child, for whom emotional wellbeing can dramatically impact the ability to cope with intensive therapy.
Several months into her treatment in Toronto, Rati began refusing to talk on the telephone with her siblings back home in Botswana. She said they must not love her anymore because they wound not come to be with her. As a toddler, she couldn’t understand the concept of impossibly expensive flights. She only knew that a loving father and sisters would be with her when she was scared and hurting. Having brought her to Canada, I felt a deep responsibility for her emotional pain, and for the difficult mission to reunite her family.
We find that the parent back home is rarely included in consultations with the doctors, leading to conflict when difficult decisions must be made, and further delays to necessary enucleation when a child’s life is at risk.
Language barriers often prevent the family from integrating with the local community at the international centre, leading to intense feelings of isolation. Cultural differences leave families feeling confused, overwhelmed and isolated when they don’t have anyone to help them settle and orient themselves in a strange city. Many families say they didn’t receive the support they had hoped for or expected. However, we observe that few families seek out assistance. Most rely on others to lead them, and if support is not offered, parent and child may flounder quickly, even abandon care altogether.
Estella was diagnosed with bilateral retinoblastoma at 6 months old. She and her mother, Corinne, travelled from their home in rural Benin to Nigeria for treatment that offered hope of saving some sight. They left behind her father, two brothers and the security of an extended family community, communicating erratically by text and cell phone conversations when either parent had spare funds for cellular credit.
Corrine had no experience of living in a large city before arriving in Nigeria for Estella’s care. She felt overwhelmed by the environment, and days spent caring for her sick daughter offered little opportunity to seek out people she could connect with. Two months into treatment, she had a chance meeting on a bus with a woman who spoke her tribal language. But she found they had little in common beyond a shared language, and they failed to ignite a lasting friendship, deepening Corrine’s sense of isolation and despair.
Though a number of doctors at the hospital spoke fluent French, none were members of Estella’s medical team. Connie felt there always seemed to be a scramble to find a French speaker available to translate during consultations. She felt alone, unsupported, and inconvenient. As funds began to dwindle, she rapidly lost hope of her ability to complete her daughter’s care. Eventually, she took Estella home to Benin, where her second eye was later removed.
Rati and her mother, Salome, relax with a friend, Ericka, at the Ronald McDonald House during Rati’s treatment in Canada. Ericka’s daughter also had retinoblastoma and she offered great encouragement and friendship to Salmoe and Rati.
Key Considerations for International Care
Medical teams, international patient office staff, families and their advocates can work together across borders to ensure the best care in the best place to give the best possible outcome for the individual child. When everyone works together, there is more knowledge, understanding and ability to address issues before they become a threat to the child’s life.
1. Providing Information
Who gives what information at your treatment centre? Who will counsel parents if enucleation has been recommended locally, or is advised by your team? How will you assess risk for treatment delays and their likely impact on the child? Is information imparted directly to the family or to an advocate / representative? Do you arrange for the retinoblastoma specialist to speak directly with the parents before accepting the child for treatment, with an appropriate translator if necessary?
Don’t Assume Knowledge: The family or their representative will likely have no clear understanding of retinoblastoma. Many families do not have access to local cancer support services, and you may be the first specialist they have made contact with. We find many charity / aid workers helping families have never heard of retinoblastoma before the individual child they contact us about. Families absorb very little when they are in shock, and hear what they want to hear when in denial about enucleation. Many do not have a local resource from which to seek information. Repeat at every opportunity, as clearly as possible.
Counsel on Enucleation Risk: If eye salvage therapy is undertaken, ensure the family understands at every stage of care that enucleation remains a possibility.
Counsel on Extraocular Impact: While advanced extraocular retinoblastoma is uncommon in developed countries, the risk of cancer spreading beyond the eye is higher for children who seek international care. Before the family commits to expensive international care, clearly explain to them the impacts of untreated cancer spread beyond the eye, and how this may occur either because of delayed initial treatment or poor follow up care.
Explain Follow Up Care: Ensure the family understands about the importance of follow up care, what care will likely involve beyond the child’s specific treatment, and why. Discuss timescales, potential care costs, and possibilities for collaborative care closer to home that could reduce family burdens. Enlist the family’s help in liaising with local doctors to help build their confidence in the local team from the very beginning.
Provide Travel and Housing Assistance: Ensure the family promptly receives all available information about housing options near the hospital, and their costs. Suggest that they investigate compassionate rates offered by airlines and, if necessary, internal air transfer to your hospital’s city with mission organizations like Angel Flight. Don’t wait for parents to request this information – they may not know they should ask for it.
2. Collaboration for Local Care
Is International Care Best?: Your centre may offer expert care not available locally, but expensive travel and treatment with long separation from loved ones and everything familiar may not be in the best interests of the child or family.
Is Local Collaboration Possible: Talk with the parents and diagnosing physician to find out if you can support a medical team or individual doctor to treat the child locally. Most families have more confidence in the local team when they know their child’s care is being followed by an experienced international doctor. A little time invested early can save not only the child’s life, but preserve also the financial, mental and physical health – the entire future – of their family.
Can you Support Post-Op Pathology: Enucleation is available in almost every country, but good pathology is less readily available. Collaboration can support urgent enucleation close to home. Ask what pathology is available, how long turn-around-time is expected to be, and what information is usually provided in reports. Can you assist the pathology process? Can your ocular pathologist assist the local pathologist to deliver the best possible report that can inform the child’s clinical care? If swift, effective local pathology is not possible, can the enucleated eye be sent to your international centre for examination? This may not always be possible due to export/import restrictions, even if both parties are willing. What else can your team do to support at the pathology stage?
3. Financial Situation
Ask How Care Will Be Funded: Recognise that self-funded and fundraising families have the highest risk of delayed initial treatment. Self-funding, fundraising, employer or bank loans are likely to impact the family’s ability to fund follow up care. Identify how the initial treatment will be financed, and how the family intends to fund follow up care. Knowing this information will influence your future decisions and options to help the child and family. Identify how this information will be gathered and who will be responsible for gathering it (doctor, social worker, international office etc.). How will it be shared with all need-to-know people in the international office and care team to support sensitive, compassionate and effective discussions with the family?
Support Fundraising: How can you support the family’s fundraising to ensure their child has the best opportunities and minimize their financial and emotional burdens in the process? Does the International Patient Office have a fundraising guide for patient families? Can the parents or their advocates receive mentoring from an experienced individual in your hospital’s community fundraising team? What other resources, support, and signposting can you offer to help them take on this huge challenge?
4. Follow Up Care
Plan and Partner Early: Identify a local centre as early as possible so the doctors can follow the child’s care alongside you throughout treatment, and be well prepared when the family return home. Ensure that both centres develop a Follow Up plan together so the local doctors are confident and able to follow the child, and you can communicate effectively with one another. Identify who will have oversight and be the family’s lead at each centre, and always send the family home with a complete copy of the child’s medical record to aid local follow up care.
5. Psychosocial Care
Include Both Parents: Wherever possible, engage the parent back home so they fully understand what is happening and feel involved in their child’s care. If time differences and connections allow, add them directly into consultations using Skype, Facetime or similar tools. If real-time consultation isn’t possible, talk to them separately and send them a report so they are up-to-date and have opportunities to ask questions. This will reduce the risk of misunderstandings, confusion and upset later, especially if the child’s eye needs to be removed.
Provide a Welcome Buddy: Offer the family a friendly advocate to assist during their first few weeks at the hospital, especially if a parent is travelling alone. Someone who can help provide orientation around the hospital and the city, and be an understanding friend in a strange land. This person might be a hospital volunteer, a former parent, a member of the expatriate community from the family’s home country, a volunteer from a local community service organization. Take care to identify a buddy who speaks the same language as the parent. A Welcome Buddy may only be present in the family’s life for a short time as they become established in the city, or they may become a friend for life. But the emotional support they provide will likely be invaluable to both parents and child in those difficult first days and weeks, and may change their entire care experience.
Collaborative Care for Child and Family
Overseas therapy can save children’s lives and eyes when specialised treatment is not locally available, but desperate relatives are rarely able to think rationally about the financial and logistical implications of such treatment. Advocates for the child, including friends, well-wishers, medical professionals and hospital administrators, must consider this when communicating with the family.
“Yes we can” is not the same as “yes we should”. Too often, the outcome for a child whose family seeks international care is worse than could be achieved closer to home. Sensitive conversations about the need for urgent treatment, realistic options, costs, finances and logistics informs good decisions and counselling to set up best possible care.
When we work in isolation, we see only a piece of the puzzle. When the family, international and local doctors, and support team work together with open, honest discussion, the child has a better chance of cure and the family have fewer burdens.
Strong collaboration supports effective use of limited resources, likelihood of consistent follow-up care and best outcome possible for everyone involved. In the process, local knowledge and skills grow to support care for more children diagnosed with eye cancer.
Sera gives a big thumb’s up to her new prosthetic eye, received during follow up care we helped to arrange in Australia.
90% of children with retinoblastoma live in developing countries, and globally, less than 3 in 10 children survive. A stark contrast to the experience of developed countries, where more than 96% of children are cured. Read our previous blog to discover some of the biggest challenges to care, and some ways in which they can be overcome.
About the Author
Abby’s father was diagnosed with bilateral retinoblastoma in Kenya in 1946. Abby was also born with cancer in both eyes. She has an artificial eye and limited vision in her left eye that is now failing due to late effects of radiotherapy in infancy.
Abby studied geography at university, with emphasis on development in sub-Saharan Africa. She co-founded WE C Hope with Brenda Gallie, responding to the needs of one child and the desire to help many in developing countries. After receiving many requests for help from American families and adult survivors, she co-founded the US chapter to bring hope and encourage action across the country.
Abby enjoys listening to audio books, creative writing, open water swimming and long country walks.