Unmet Needs During Extended Survivorship

The needs of cancer survivors and “secondary survivors” (family members who have lived through the cancer experience with their loved ones) do not vanish once treatment has been completed. Yet due to the intensity of the treatment experience, the interdisciplinary cancer team often focuses on applying distress-reducing interventions during active therapy while minimizing the importance of ongoing posttreatment challenges.

Two publications in particular offer useful assessments of psychometric tools that enhance our understanding of the impact of this phase of the cancer continuum on survivors and secondary survivors.

In the first article, Mimi Jiao and colleagues[1] identified five tools that focused on needs during the post–cancer treatment phase of the cancer trajectory, from the survivor’s perspective. Their evaluation of these tools revealed that none addressed all of the potential unmet needs (ie, physical, emotional, lifestyle or emotional, practical, family/relational, sexual, and cognitive domains). The Survivor Unmet Needs Survey (SUNS; see 2010 description by Campbell et al[2]) had the strongest psychometric properties but its length (89 items, across 5 domains) was a constraining factor. Jiao et al noted that the Short Form Survivor Unmet Needs Survey (SF-SUNS; see 2014 description by Campbell et al[3]), comprising 30 items, may be an appropriate alternative but requires additional psychometric testing.[1] Also, as Campbell et al have noted, large independent studies of its use in cancer survivors will be needed to confirm its test-retest reliability and predictive validity.[3]

In the second review article, Prue, Santin, and Porter undertook a similar inventory of available instruments used to address the ongoing needs of family caregivers following the patient’s completion of treatment.[4] They identified seven self-report caregiver needs assessment tools, all of which required additional psychometric testing. The SPUNS tool (Cancer Support Person’s Unmet Needs Survey) demonstrated high internal consistency and test-retest reliability; however, as a 78-item instrument its use as a screening tool in clinical practice may be limited.[5]  In contrast, the 40-item Supportive Care Needs Survey-Partners and Caregivers (SCNS-P&C) addresses needs across four key domains (Health Care Service Needs, Psychological and Emotional Needs, Work and Social Needs, and Information Needs).

The oncology nurse-who, throughout the cancer trajectory is the point person most consistently at the interface between healthcare services and patients and their families-must have the best clinically validated tools on hand to determine who is most vulnerable and in need of additional support and counsel when cancer treatment ends. As facilitators of clinical consultations, oncology nurses need reliable measures to warrant making the referral to team members. Short trigger tools are required to establish appropriate referrals to interdisciplinary colleagues on the cancer care team. Since collaborative care is the ultimate goal, access to practical resources is of the utmost importance.[3]

References:

1. Jiao M, Hall AE, Nolte L, et al. A rapid review of needs assessment tools for post-treatment cancer survivors. Eur J Cancer Care. 2017 Sep 18. [Epub ahead of print]

2. Campbell HS, Sanson-Fisher R, Turner D, et al. Psychometric properties of cancer survivors’ unmet needs survey. Support Care Cancer. 2010;19:221-30.

3. Campbell HS, Hall AE, Sanson-Fisher RW, et al. Development and validation of the Short-Form Survivor Unmet Needs Survey (SF-SUNS). Support Care Cancer. 2014;22:1071-9.

4. Prue G, Santin O, Porter S. Assessing the needs of informal caregivers to cancer survivors: a review of instruments. Psychooncology. 2015;24:121-9.

5. Campbell HS, Sanson-Fisher R, Taylor-Brown J, et al. The cancer support person’s unmet needs survey: psychometric properties. Cancer. 2009;115:3351-9.