Raymond A. Wood Foundation Reveals Caregiver Burden in Pioneering Craniopharyngioma Study

HomeNewsRaymond A. Wood Foundation Reveals Caregiver Burden in Pioneering Craniopharyngioma Study
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Amy Wood


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Amy Wood

The Raymond A. Wood Foundation recently published its first research study entitled “Caregiver burden and its relationship to health-related quality of life in craniopharyngioma survivors” in the prestigious Journal of Clinical Endocrinology & Metabolism. The study was led by members of the Raymond A. Wood Foundation including Nathalie Kayadjanian, PhD (Scientific Advisor), Eugenie Hsu, PhD (Board member and caregiver), Amy Wood (Co-founder, Executive Director and caregiver) and Dean Carson, PhD (Board member).

About the Study

Craniopharyngioma (CP) is a complex and chronic medical condition requiring lifelong care and management. The negative impact of craniopharyngioma on the quality of life of survivors is well documented in the literature. Surprisingly, its impact on caregivers is unknown.

Lifelong caregiving can be stressful so it is important to understand how the burden of disease may adversely affect the well-being of CP caregiver and the quality of care and outcome for CP survivors. By understanding the burden of disease on CP caregivers, we can begin to imagine the economic toll to the CP family and to society-at-large.

Study Goals

The study’s goal was to understand the level of multifaceted strain perceived by the caregiver from caring for CP survivors. We used the Zarit Burden Interview, a widely used validated instrument that measures caregiver burden in various disabilities and chronic illnesses.

The study also investigated determinants of caregiver burden including caregiver’s socio-demographics, care duration as well as survivor’s clinical characteristics and health-related quality of life.

The Purpose of the Study

As a research-driven patient advocacy organization founded and powered predominantly by caregivers, we have experiences with craniopharyngioma privy only to those involved in the daily care of our survivors. Caregiver experiences of craniopharyngioma may reveal unmet needs that would otherwise be unknown in the broader clinical and research ecosystem. For example, we developed a list of health issues affecting survivors after tumor treatment not limited only to issues that are known and well described in the literature; we also included issues reported informally in social media support groups by caregivers and survivors.

We wanted to perform a robust research study gathering high-quality data that could be published in a peer-reviewed scientific journal of international impact so that results could be shared with all stakeholders including survivors, caregivers, clinicians, scientists as well as members of pharmaceutical industry and regulatory agencies. By publishing and sharing caregiver-centered findings, we can better serve the patient and caregiver-centered needs of our brain tumor community. This was the first study to date on the caregiver experience of craniopharyngioma.

Key Findings

The analyses of the anonymous responses of 82 caregivers of CP survivors who responded to an online survey revealed that:

  1. Caregivers reported an average of 13 out of 29 health issues in survivors following tumor treatment including excess weight, hypopituitarism, fatigue, mood, cognition, social issues, temperature dysregulation, visual impairment, and sleep problems. Strikingly, we found that 70% of survivors who experienced obesity also experienced hyperphagia and that hyperphagia, not obesity, significantly impacted health-related quality of life.
  2. The level of caregiver burden was moderate but higher than the level measured in caregivers for persons with dementia, Alzheimer’s disease, or chronic pain.
  3. Caregiver burden was independent of caregiver level of education, care duration, income, survivor age, age at diagnosis, or tumor recurrence. In contrast, caregiver burden was associated with the survivor’s number and type of health issues and was significantly higher for caregivers or survivors with symptoms of hypothalamic dysfunction including hyperphagia but not obesity.
  4. Survivors’ health-related quality of life was very poor and was associated with the number and type of health issues. We found that the health-related quality of life of survivors predicted caregiver burden in CP.

Additionally there were some findings that were surprising, including:

  1. The levels of burden suggest that up to 80% of caregivers may be at risk for depression.
  2. Caregiver burden was associated with the number and types of survivor’s health issues, not the caregiver’s socio-demographics or caregiving duration.
  3. Thanks to the caregiver-centered approach we adopted, our study exposed hyperphagia as a condition worth quantifying and revealed symptoms that have not been described in the literature such as dermatological problems.
  4. Our study was the first to quantify the proportion of subjects with hyperphagia; we found that 70% of subjects with obesity also experienced hyperphagia. This suggests that hyperphagia is a critical unmet need for our community that has been overlooked.
  5. Our study separated hyperphagia and obesity, questioning the restrictive focus of new therapeutic developments for hypothalamic obesity on obesity only.
  6. More than 80% of subjects 18 and over resided with their families of origin and nearly all were medically dependent on their caregivers.  This result points to the life-long dependency of survivors on their caregivers, extending into adulthood.

How Findings Can Be Applied in Clinical or Other Practical Ways to Help the Patient Community?

  1. Our findings draw particular attention to the unmet needs for support of caregivers in their own right and the high risk for depression in caregivers.
  2. Importantly, we show that addressing survivors’ multiple symptoms may improve the QOL of survivors and reduce caregiver burden, offering an avenue for alleviating caregiver burden.
  3. Our study shows that caregiver assessment of survivor HRQOL is a valuable tool to measure the overall impact faced by caregivers of CP survivors.
  4. Our study highlights the lifelong dependency that survivors have on their caregivers and that this may facilitate the understanding of disability issues facing many craniopharyngioma survivors.
  5. Finally, our study stresses the importance of adopting a patient/caregiver-centered research approach by collecting both patient and caregiver-voice to better identify critical unmet needs. Future interventions should focus on caregivers in addition to survivors, with particular attention to caregiver perceptions of the long-term sequelae for CP survivors.

Research Questions Generated from the Study

  1. Our study separated hyperphagia and obesity and identified hyperphagia as a critical unmet need for both survivors and caregivers. Future research is needed to better characterize and validate methods to assess hyperphagia. This is particularly important in the context of clinical trials for assessing the effectiveness of a drug against hyperphagia.
  2. The study also suggests expanding the focus of development of new therapeutic on symptoms of hypothalamic dysfunction including temperature dysregulation, behavioral acting out, sleep problems, social impairment, fatigue, and psychiatric problems, rather than hypothalamic obesity alone.
  3. Our findings suggest that alleviating survivors’ symptoms will not only improve their quality of life but also reduce caregiver burden. This could potentially improve caregiver health and additionally, decrease the economic costs incurred by caring for CP survivors. A comprehensive cost evaluation of CP from a societal perspective is necessary, considering the patient and caregiver journey for the duration of the survivor’s dependency on the caregiver.

Next Steps

Measuring Hyperphagia

Due to the prevalence and the adversely impactful nature of hyperphagia in CP survivors, we will investigate hyperphagia in CP. The dearth of research on this topic demands a rigorous study to characterize and measure hyperphagia in this population.

Patient Registry

Given the importance of collecting the patient’s and caregiver’s perspectives on the impact of the disease, treatments and other unmet needs, we are developing a patient registry that will provide a rich set of evidence-based data to facilitate and guide future research and clinical studies on patient/ caregiver-needs.


We would like to thank the caregivers for their valuable participation in this project. This research study is a great example of how patient and caregiver empowerment can influence the research agenda for improving care and treatments to alleviate the burden of disease on the community.