Date: 08/25/2022

Needs Assessment Tool-Ichthyosis Caregivers (NAT-IC)

FIRST mom and researcher Carleen Walsh has been awarded a PhD doctorate earlier this month. She cannot emphasise how much the ichthyosis community support, the support of FIRST and the medical community has meant to her over the past few years. In all seriousness, without FIRST, this research would not have proved possible. My external examiner was Prof. Amy Paller and she expressed huge support for the research and has kindly said she would help me ensure max impact for the findings. To have her blessing has given me untold confidence in my research findings and a renewed energy to continue working to improve the lives of our ichthyosis community. If I can ever help in any way, please never hesitate to contact me.

From Dr. Amy Paller on Carleen's research, "There is no one who understands the ichthyosis experience better than family. I have been so excited about Dr. Walsh 's decision to focus on the unmet needs of the family in terms of support -- and make it her mission to study these needs with guidance from academic experts.  She has beautifully completed her research and will no doubt be publishing several aspects of her data in scientific journals. Equally impactful, though, is the fact that Dr. Carleen Walsh is now well trained to ask many additional questions that will benefit the ichthyosis community and beyond. I can't wait to watch her grow and contribute."

From Dr Carleen Walsh, "a sincere thank you to all participants for their trust, passion, friendship, and selfless contribution of time and energy to ensure the success of this project.  I am both humbled and privileged to have made new life-long friends, who have taught me so much from their lived experience and wealth of expertise. "

Main findings from both studies:

Study 1: As the largest international qualitative study to date involving ichthyosis caregivers (including affected adults), this research has confirmed that no caregiver reported that their child was a burden, but rather that they had experienced a wide variety of unmet supportive care needs which contributed to significant emotional distress, which impacted on the wider family.  The study adopted a caregiver-centred approach, which enabled the identification of the (i) positives of caregiving (ii) eleven sociodemographic/screening factors that were significantly associated with disease severity and/or total need scores (ii) fourteen impactful disease parameters that demonstrated significance with total severity (iv) unmet supportive care needs (v) triggers and barriers to caregiver identification and (vi) key transition stages throughout the care continuum.

Study 2: As the first international survey study to date that uniquely invited, and equally weighted the ratings of, experts by experience (caregivers and multi-disciplinary professional experts), a comprehensive list of outcomes (screening variables, disease parameters, needs and supports) was refined to a more meaningful ‘core’ set. This core outcome set, or COS, will prove crucial for informing future clinical practice, clinical trials, service delivery and research. Crucially, this study has provided the caregiver with a voice, promoting them as active stakeholders in shared decision making around what disease parameters are most impactful when providing care, what factors influence their coping ability, and what supports would best address their unmet needs. 

Caregiver participation in this survey also led to the development of the first comprehensive, online, self-report, solution-focused model of dermatological caregiver assessment, the Needs Assessment Tool-Ichthyosis Caregivers (NAT-IC). This is the first dermatological COS to psychometrically assess and confirm the validity of proposed core outcome domains, which will inevitably improve professional confidence in communicating evidence-based advice derived from the identification of life impact endpoints that were most relevant to the real world. 

Although psychometric evaluation of this e-tool confirms that ichthyosis severity and caregiver need are significantly and moderately correlated, the lack of statistical difference between the different severity groupings and caregiver need confirms the importance of assessing the needs of all ichthyosis caregivers, regardless of severity.  As such, the NAT-IC includes two stand-alone validated caregiver scales; the Scale of Perceived Ichthyosis Severity (SPIS) and the Assessment of Need and Support.  While not a substitute for extensive diagnostics by trained clinicians, statistical testing of the SPIS confirms its ability to allow ichthyosis caregivers to accurately assess their child’s disease severity remotely. This is important given the competing demands in busy clinic settings and the need to provide a solid base for establishing a shared understanding for an effective treatment plan.  This e-tool may facilitate caregivers to report the perceived severity of their child’s ichthyosis, articulate their needs and choose their own solutions, while providing healthcare professionals with an opportunity to identify, triage and/or assess self-reported unmet supportive care needs, improving family quality of life and increasing the likelihood of more conjoined and compassionate care. 

In summary, it is hoped that findings from this research will improve understanding of both the impact and implications of caring for a child living with ichthyosis, potentially closing the gap between the level of health and social care currently available and the level of support perceived as needed by the caregiver. The integral role caregivers play needs to be strengthened and recognised. Instead of treating global burden as a health breach, there is a need to rethink how the global burden of caregiving is considered. Love and dedication are not antidotes for caregiver burnout; waiting for caregiver ‘burden’ to impact psychosocial wellbeing is neglectful and detrimental.  The maxim, ‘prevention is better than cure’ was consistently emphasised throughout the findings and reinforces the need for Governments to safeguard and optimise the support garnished from informal caregivers. The status of caregiver knowledge must shift from being recognised as anecdotal to evidential to improve patient and family outcomes.  A brave fundamental shift in international policy perspective is needed to legitimise the caregiver, whereby framework conditions go beyond considering and instead prioritise the lived experience of being co-afflicted ahead of economic gain. Formal state recognition of ichthyosis at a national level as a rare, and potentially life limiting condition, is not only optimal, but crucial as a critical backbone of healthcare systems to promote positive patient and caregiver health outcomes.  This is important given the inequitable and complex international healthcare systems at both State and National level resulting from a lack of National Plans or Strategies on Rare Disease, the availability and usefulness of different formal health supports being dictated by government resourcing, the dramatic and varied emotional response from caregivers, and the increasing concern relating to the informal delivery of long-term integrated care.  A ‘one-size-fits-all’ approach will not work in formally addressing all caregiver stressors, demands and resources. Assessment that aims to support unmet care needs is key to the development of integrated health and social care, inevitably optimising the physical and emotional wellbeing of caregivers and their families by supporting them to participate in economic, social, cultural, community and family life. Policy makers and healthcare providers should not compare caregiver assessment as opening a Pandora’s box, but instead realise the benefits of regularly assessing needs and supports in an accessible, timely and ongoing manner. As dermatological caregiving research moves forward with significant public and private investment, rigorous measurement of caregivers’ needs is essential for the development of social services, public policies and improved COS uptake.  Findings suggest that in the absence of curative interventions, a supportive solution focused model of assessment, incorporating a palliative care approach, would be most appropriate for consideration with this population. Future adoption of the NAT-IC could prove the necessary catalyst for understanding the supportive/palliative care needs of the caregiver and responding with appropriate resources, without the pervasive challenges currently experienced by caregivers.   

Sharing of the findings from both studies will be achieved through future publications, the online links of which will be shared by FIRST in future.