CN58 - Mapping the measurement of lymphoma survivors’ unmet needs and quality of life outcomes: Evidence for a lymphoma-specific questionnaire

Background

A pressing issue for cancer survivorship is the availability of care and resources for survivors. The assessment of survivors’ needs has advanced efforts to improve this. Evidence relating to lymphoma-specific cancer survivors and the measurement of their needs and quality of life outcomes is limited. While various instruments assessing cancer patients' needs and quality of life are available, finding the most relevant, lymphoma-specific and psychometrically rigorous instruments is needed to ensure that future care is responsive to survivors’ needs. Therefore, this research aimed to conduct an instrument development process and a content validity evaluation of the Living Beyond Lymphoma survey.

Methods

The development process involved a literature review; this identified the most psychometrical robust and appropriate instruments, which were assimilated into a useable form. Experts (n = 8) with lived experience or clinical expertise in lymphoma assessed the survey's clarity, relevance, and representativeness. Experts made suggestions, such as the addition or deletion of items. Content validity indices were calculated at the item level (I-CVI) and the scale level (S-CVI).

Results

The experts rated the living beyond lymphoma survey as clear (S-CVI/Ave = 0.94 excellent), relevant (S-CVI/Ave = 0.96 excellent) and representative (S-CVI/Ave = 0.94 excellent). Universal agreement for the scale (S-CVI/UA) was lower (range S-CVI-UA = 0.58 – 0.75 fair-good). There was strong evidence supporting the content validity of the living beyond lymphoma survey, providing a valid and comprehensive instrument for use in the assessment of lymphoma cancer survivors’ unmet needs and quality of life outcomes.

Conclusions

Given the excellent average scale agreement but fair to good universal agreement for the scale, the wide variation in experts’ backgrounds and experiences could inadvertently reduce control over item agreement. The instrument was considered helpful for assessing the needs and well-being of lymphoma cancer survivors.

Clinical trial identification

Editorial acknowledgement

Legal entity responsible for the study

The authors.

Funding

Trinity College Dublin.

Disclosure

A. Drury: Financial Interests, Personal, Full or part-time Employment: University College Dublin; Financial Interests, Institutional, Research Grant, I am a collaborator on the Pfizer-funded project ABC4Nurses, which is coordinated and managed by EONS: Pfizer; Non-Financial Interests, Invited Speaker: European Oncology Nursing Society; Non-Financial Interests, Advisory Role, I am an advisor on several EONS projects, including ABC4Nurses and RCC & HCC PROMS: European Oncology Nursing Society. All other authors have declared no conflicts of interest.