Survivor Unmet Needs Research Articles

Factors associated with long-term functional outcomes, psychological sequelae and quality of life in persons after primary brain tumour

To examine factors impacting long-term functional outcomes and psychological sequelae in persons with primary brain tumours (BT) in an Australian community cohort. Participants (n = 106) following definitive treatment for BT in the community were reviewed in rehabilitation clinics to assess impact on participants' current activity and restriction in participation, using validated questionnaires: Functional Independence Measure (FIM), Perceived Impact Problem Profile (PIPP), Depression Anxiety Stress Scale, Cancer Rehabilitation Evaluation System-Short Form and Cancer Survivor Unmet Needs Measure. Mean age of the participants was 51 years (range 21-77 years), majority were female (56 %) with median time since BT diagnosis 2.1 years and a third (39 %) had high grade tumours. Majority showed good functional recovery (median motor FIM score 75). Over half reported pain (56 %), of which 42 % had headaches. Other impairments included: ataxia (44 %), seizures (43 %); paresis (37 %), cognitive dysfunction (36 %) and visual impairment (35 %). About 20 % reported high levels of depression, compared with only 13 % in an Australian normative sample. Two-third (60 %) participants reported highest impact on the PIPP subscales for psychological wellbeing (scores of >3 on 6-point scale) and participation (45 %). Factors significantly associated with poorer current level of functioning and wellbeing included: younger participants (≤40 years), recent diagnoses, aggressive tumour types and presence of pain. No significant differences in scale scores were found across various treatments (surgery, chemotherapy or radiotherapy) on outcomes used. Rehabilitation for BT survivors is challenging and requires long-term management of psychological sequelae impacting activity and participation. More research into participatory limitation is needed to guide treating clinicians.

Gynecological Cancer Survivors: Assessment of Psychological Distress and Unmet Supportive Care Needs

This study highlights psychosocial needs of gynecological cancer survivors, contributing to evaluation of the Cancer Survivors Unmet Needs measure. Of the 45 participants, 28.9% reported clinical anxiety, 20.0% mild-to-severe depression, and 15.6% had probable posttraumatic stress disorder. Strength of unmet needs was associated with anxiety, depression, posttraumatic stress, poorer quality of life, younger age, and greater time since diagnosis. Linear regressions showed clinical measures, quality of life, optimism, and self-blaming coping style explained 56.4% of strength of unmet needs. Anxiety, functional well-being, posttraumatic stress, and emotional well-being accounted for 40.7% of variance in fear of recurrence, with emotional well-being the strongest predictor.

Psychometric properties of cancer survivors’ unmet needs survey

This study aims to develop a psychometrically rigorous instrument to measure the unmet needs of adult cancer survivors who are 1 to 5 years post-cancer diagnosis. "Unmet needs" distinguishes between problems which survivors experience and problems which they desire help in managing. The survey was developed from a comprehensive literature review, qualitative analysis of the six most important unmet needs of 71 cancer survivors, review of the domains and items by survivors and experts, cognitive interviews and a pilot test of 100 survivors. A stratified random sample of 550 cancer survivors, selected from a population-based Cancer Registry, completed a mailed survey to establish reliability and validity. The final 89-item Survivors Unmet Needs Survey (SUNS) has high acceptability, item test-retest reliability and internal consistency (Chronbach's alpha 0.990), face, content and construct validity. Five subscales measure Emotional Health needs (33 items, 19.4% of variance), Access and Continuity of Care (22 items, 15.1%), Relationships (15 items, 12.1%), Financial Concerns (11 items, 10.3%) and Information needs (eight items, 8.1% of the variance). This instrument has strong psychometric properties and is useful for determining the prevalence and predictors of cancer survivors' unmet needs across types of cancer, length of survivorship and socio-demographic characteristics. Use of the SUNS will enable more effective targeting of programmes and services and guide policy and health planning decisions. This study is an important step toward evidence-based planning and management of problems which the growing survivor population requires assistance in managing.