Using cognitive interviews to evaluate items for measuring sexual functioning across cancer populations: Improvements and remaining challenges

Center for Clinical and Genetic Economics, Duke Clinical Research Institute, PO Box 17969, Durham, NC 27715, USA.
Quality of Life Research (Impact Factor: 2.49). 09/2009; 18(8):1085-93. DOI: 10.1007/s11136-009-9523-x
Source: PubMed


One goal of the Patient-Reported Outcomes Measurement Information System (PROMIS) is to develop a measure of sexual functioning that broadens the definition of sexual activity and incorporates items that reflect constructs identified as important by patients with cancer. We describe how cognitive interviews improved the quality of the items and discuss remaining challenges to assessing sexual functioning in research with cancer populations.
We conducted 39 cognitive interviews of patients with cancer and survivors on the topic of sexual experience. Each of the 83 candidate items was seen by 5-24 participants. Participants included both men and women and varied by cancer type, treatment trajectory, race, and literacy level. Significantly revised items were retested in subsequent interviews.
Cognitive interviews provided useful feedback about the relevance, sensitivity, appropriateness, and clarity of the items. Participants identified broad terms (e.g., "sex life") to assess sexual experience and exposed the challenges of measuring sexual functioning consistently, considering both adjusted and unadjusted sexual experiences.
Cognitive interviews were critical for item refinement in the development of the PROMIS measure of sexual function. Efforts are underway to validate the measure in larger cancer populations.

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    • "They were developed based on extensive qualitative and quantitative research with cancer patients [1-4]. Recent reports support the measures’ content validity (based on patient and clinician focus group data regarding relevant sexual concepts) [3], face validity (based on cognitive interview data) [2], and discrimination between known groups of patients who had (or had not) asked a provider for help with sexual problems [4]. However, no published report has provided comprehensive evaluation of the convergent and discriminant validity of the core PROMIS SexFS measures. "
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    ABSTRACT: Background With data from a diverse sample of patients either in treatment for cancer or post-treatment for cancer, we examine inter-domain and cross-domain correlations among the core domains of the Patient-Reported Outcomes Measurement Information System Sexual Function and Satisfaction measures (PROMIS® SexFS) and the corresponding domains from conceptually-similar measures of sexual function, the International Index of Erectile Function and the Female Sexual Function Index. Findings Men (N=389) and women (N=430) were recruited from a tumor registry, oncology clinics, and an internet panel. The PROMIS SexFS, International Index of Erectile Function, and Female Sexual Function Index were used to collect participants’ self-reported sexual function. The domains shared among the measures include desire/interest in sexual activity, lubrication and vaginal discomfort/pain (women), erectile function (men), orgasm, and satisfaction. We examined correlations among different domains within the same instrument (discriminant validity) and correlations among similar domains measured by different instruments (convergent validity). Correlations demonstrating discriminant validity ranged from 0.38 to 0.73 for men and 0.48 to 0.74 for women, while correlations demonstrating convergent validity ranged from 0.62 to 0.83 for men and 0.71 to 0.92 for women. As expected, correlations demonstrating convergent validity were higher than correlations demonstrating discriminant validity, with one exception (orgasm for men). Conclusions Construct validity was supported by convergent and discriminant validity in a diverse sample of patients with cancer. For patients with cancer who may or may not have sexual dysfunction, the PROMIS SexFS measures provide a comprehensive assessment of key domains of sexual function and satisfaction.
    Health and Quality of Life Outcomes 03/2013; 11(1):40. DOI:10.1186/1477-7525-11-40 · 2.12 Impact Factor
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    • "Cognitive interviewing is used to evaluate sources of response error in questionnaires , developed during the 1980's by survey methodologists and psychologists [14]. Consequently, some items were rephrased. "
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    ABSTRACT: Introduction: Patient-centeredness is increasingly recognized as a crucial element of quality of care. A suitable instrument to assess the level of patient-centeredness for Parkinson's disease (PD) care is lacking. Here we describe the development and validation of the Patient-Centered Questionnaire for PD (PCQ-PD), and its initial application in a large patient sample. Methods: Based on the outcomes of eight focus groups we composed a questionnaire that measures patient-centeredness by assessing patients' care experiences. The questionnaire was sent to 1112 Dutch PD patients, and face-, content- and construct-validity and reliability were assessed. The level of patient-centeredness was determined by calculating scores for overall patient-centeredness [0-3], subscale experiences [0-3], item experience, item priority and quality improvement. Results: 895 PD patients (net response 82.0%) completed the questionnaire. After the validation procedure, the PCQ-PD addressed 46 care aspects in six different subscales of patient-centeredness. The internal consistency of the instrument, expressed in Cronbach's α per subscale, ranged from 0.62 to 0.84. The overall patient-centeredness score was 1.69 (SD 0.45). 'Emotional support' (1.05, SD 0.90) and 'provision of tailored information' (1.18, SD 0.57) subscales received the lowest experience ratings. 'Access to medical records' obtained the highest item quality improvement score (5.44). Conclusions: This study produced a valid instrument to measure patient-centeredness in PD care. Psychometric properties of the instrument were good. Application of the PCQ-PD revealed the level of patient-centeredness in the care for PD patients in The Netherlands. The main outcome was a compelling call for the provision of tailored information and emotional support.
    Parkinsonism & Related Disorders 06/2012; 18(9). DOI:10.1016/j.parkreldis.2012.05.017 · 3.97 Impact Factor
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    • "Quality-of-life research among people facing serious physical illness has grown tremendously over the last 20 years. The best exemplar is in the area of cancer, where new treatments and longer survivorship trajectories have encouraged the development of scales and interventions aimed to improve aspects of a cancer survivor's life (Bottomley, 2002; Fortune-Greeley et al., 2009; Jeffery et al., 2009; Penson, Wenzel, Vergote, & Cella, 2006). Within this larger body of quality-of-life research lies the domain of sexual quality of life. "

    Handbook of Health Psychology, 01/2012: chapter Measuring sexual quality of life: Ten recommendations for health psychologists;
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