The cancer Support Person's Unmet Needs Survey

Abstract

BACKGROUND: A rigorous psychometric methodology was used to develop a measure of unmet needs for cancer survivors' principal support persons. Principal support person was defined as “someone you can count on and who helps you with your needs.” METHODS: Development of the domains and the items followed an extensive literature review, iterative input from support persons, and consultation with health professionals and front‐line staff working with cancer survivors and their supports. Cognitive interviews helped clarify item wording, and the draft questionnaire was reappraised by a group of support persons. The questionnaire was reduced to 90 items and sent to a stratified, random sample of cancer survivors selected from a provincial population‐based cancer registry. They were asked to give the survey to their support person. RESULTS: The resulting 78‐item Support Person Unmet Needs Survey has high acceptability, item test‐retest reliability, internal consistency (Chronbach alpha = .990), and face, content, and construct validity. It captures 6 domains of unmet needs and accounts for 73.5% of total variance: Information and Relationship Needs (27 items, 22.1% of variance), Emotional Needs (16 items, 15.2%), Personal Needs (14 items, 14.0%), Work and Finance (8 items, 8.8%), Health Care Access and Continuity (9 items, 8.6%), and Worries About Future (4 items, 4.8%). CONCLUSIONS: This instrument will be of use where there is an interest in examining the impact of cancer not only on cancer survivors but also on their identified principal support persons. Cancer 2009. © 2009 American Cancer Society.

Development of cancer needs questionnaire for parents and carers of adolescents and young adults with cancer

“…The questions were similar to those in other unmet needs surveys [31,32], so this finding may reflect the particular poignancy and emotional strain of supporting a young person with cancer. The respondents indicated an overwhelming preference for completing the measure at home, and 87% or more were supportive of survey results being fed back to cancer Proportion who selected agree/strongly agree for each option (%) Fig.…”

“…The more recent Cancer Support Person's Unmet Needs Survey (SPUNS) assesses the needs of the primary support person, as identified by the person with cancer [31]. The validation study for the SPUNS questionnaire reported that it was psychometrically robust with high internal consistency and adequate face, content and construct validity [31].…”

“…For example, the Problems and Needs in Palliative Care questionnaire was developed specifically for carers of patients undergoing palliative care [3,29], while the Cancer Survivors' Partners Unmet Needs Measure (CaSPUN) was designed to assess the needs of partners [30]. The more recent Cancer Support Person's Unmet Needs Survey (SPUNS) assesses the needs of the primary support person, as identified by the person with cancer [31]. The validation study for the SPUNS questionnaire reported that it was psychometrically robust with high internal consistency and adequate face, content and construct validity [31].…”

Prospective Evaluation of Unmet Needs of Rural and Aboriginal Cancer Survivors in Northern British Columbia

“…Most of the gp rss (96%) and fn rss (91%) who were interviewed or took part in focus groups also completed 16,17 . Both instruments are self-report questionnaires.…”

Factors influencing the attitudes and behaviors of oncologists regarding the truthful disclosure of information to patients with advanced and incurable cancer

“…It is among the most challenging aspects of the oncologist's professional role [1,2] and a source of substantial professional stress [3][4][5][6]. Patients with advanced and incurable cancer are dealing with the emotional impact of a life-threatening illness, complex treatment decisions with often limited likelihood of major benefit, and the challenges of balancing the maintenance of hope with realistic goals [7][8][9].…”