Oncology Section EDGE Task Force on Cancer: A Systematic Review of Patient-Reported Measures for Sexual Dysfunction

Alappattu, Meryl; Harrington, Shana; Hill, Alexandra; Roscow, A.S.; Jeffrey, Alicia

doi:10.1097/01.reo.0000000000000071

Cited by 9 publications

(3 citation statements)

References 43 publications

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“…Although it is hard to estimate the prevalence of sexual and relationship difficulties in IBD, one study showed that up to 90% of women surviving gynaecological cancer encountered such difficulties, 16 and 64% of cancer survivors would want HCPs to discuss sexuality issues. 17 Our study brings up for the first time the perspective of IBD patients, who have identified barriers to these conversations which could be classified as being personal, HCP, and environmental barriers.…”

Section: Discussionmentioning

confidence: 99%

‘These Discussions Aren’t Happening’: Experiences of People Living with Inflammatory Bowel Disease and Talking About Sexual Well-being with Health Care Professionals

Fourie

Norton

Jackson

et al. 2021

Journal of Crohn's and Colitis

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Background Inflammatory bowel disease affects all aspects of life, yet little is known about the impact of the condition on intimacy and sexuality, and if such concerns should be discussed with healthcare professionals. This hermeneutical phenomenological study aimed to explore the experiences of people living with inflammatory bowel disease discussing their sexuality concerns with healthcare professionals Methods Participants (n=43) aged 17-64 years were recruited. Data were collected via in depth interviews and anonymous narrative accounts (Google Forms). Thematic analysis was used to analyze the data. Results An overarching theme These discussions aren’t happening with four main themes were generated. The main themes were: I can’t image talking about sex; I am a person not my IBD; We need to talk about sex, and Those who talked about sex, talked badly. Participants described the lack conversations with their healthcare professionals on sexual wellbeing issues, in spite of the importance they gave to the topic, and identified barriers to having such conversations. They made suggestions for future clinical practice that would better meet their needs. The few who had discussed sexual wellbeing issues with healthcare professionals reported negative experiences Conclusion Patients’ needs and preferences about addressing concerns related to their sexual well-being during clinical appointments should be addressed routinely and competently by healthcare professionals. Understanding the implications of inflammatory bowel disease on intimate aspects of the lives of those living with the condition could improve the quality of the care provided.

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Section: Discussionmentioning

confidence: 99%

‘These Discussions Aren’t Happening’: Experiences of People Living with Inflammatory Bowel Disease and Talking About Sexual Well-being with Health Care Professionals

Fourie

Norton

Jackson

et al. 2021

Journal of Crohn's and Colitis

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“…The use of validated patient reported measures questionnaires for conducting ecological momentary assessments is well developed and can be used with good design in terms of frequency and response burden [69,70]. Patient reported experience and outcomes measures (PREMS and PROMS) have been developed in a variety of disease areas and are a promising way for mhealth app developers to get a jump start on ecological momentary assessments [71][72][73][74]. Use of PREMS and PROMS may incur a license fee but are worth the cost since the tools are generally validated and are widely used in clinical trials.…”

Section: Ecological Momentary Assessments and Interventions Are Usefu...mentioning

confidence: 99%

Designing Disease-Specific mHealth Apps for Clinical Value

Keshavjee¹,

Johnston-Jewell²,

Lee³

et al. 2022

Smart and Pervasive Healthcare

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mHealth apps for patient use are promising but continue to face a plateau in usage. Current apps work for a limited segment of the patient population, i.e., those who enjoy tracking for intrinsic rewards. There are many opportunities to support patient care in between health care provider visits that are not currently being met for many diseases and patient types (personas). This is an area of great potential growth for mHealth apps and could contribute greatly to patient health and wellness. In this chapter, we propose a framework for how to think about the between-visit needs of patients that would motivate continued use of mhealth apps. We view the app design process from the following perspectives: 1) disease-specific needs, 2) non-disease specific needs, 3) behavioral theoretical aspects of app usage and 4) app-intrinsic usage motivators. Myasthenia gravis serves as the use case for illustrating these perspectives and how to use them in designing a disease-specific mHealth app.

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“…Changes in intimacy and sexuality can arise due to the cancer itself, the treatment or psychological and social factors such as anxiety or distress [ 13 ]. For instance, cancer treatment might cause problems with sexual desire and arousal problems [ 14 – 16 ].…”

Section: Introductionmentioning

confidence: 99%

Feasibility and effectiveness of communication tools for addressing intimacy and sexuality in patients with cancer: a systematic review

Arends,

van Rossum,

Eeltink

et al. 2024

Support Care Cancer

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Purpose Patients diagnosed with cancer might experience changes in intimacy and sexuality due to the illness itself, treatment, or psychological and social factors. Healthcare professionals (HCPs) often feel reluctant to discuss these changes. This study aimed to provide an overview of the feasibility and effectiveness of communication tools that support communication regarding changes in intimacy or sexuality among patients with cancer. Methods This is a systematic review. Databases are PubMed, Embase, CINAHL, PsycInfo, Web of Science and Cochrane Library from inception to June 2023. The Mixed Methods Appraisal Tool was used to assess included studies. Data were summarized in data charting forms. Results In total 35 studies were included, published between 2001 and 2023. Most had a quantitative design and moderate methodological quality. In 11 studies, the PLISSIT model (Permission, Limited Information, Specific Suggestions, Intensive Therapy) was used. Tools were integrated in counselling sessions or training programmes for individual patients, couples, groups of patients, or HCPs. All tools were considered feasible by patients or HCPs. Twenty studies reported significant improvement in sexual functioning, quality of life, quality of care or combined outcomes. Conclusion Tools to support communication about changes in intimacy and sexuality among patients with cancer seem feasible and effective. The most commonly used tool, the PLISSIT model, proved to be feasible for HCPs and to have a positive effect on patients’ and partners’ sexual functioning and quality of life. Giving attention to changes in intimacy and sexuality seems to be important in itself, regardless of the communication tool or approach used.

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Oncology Section EDGE Task Force on Cancer: A Systematic Review of Patient-Reported Measures for Sexual Dysfunction

Cited by 9 publications

References 43 publications

‘These Discussions Aren’t Happening’: Experiences of People Living with Inflammatory Bowel Disease and Talking About Sexual Well-being with Health Care Professionals

‘These Discussions Aren’t Happening’: Experiences of People Living with Inflammatory Bowel Disease and Talking About Sexual Well-being with Health Care Professionals

Designing Disease-Specific mHealth Apps for Clinical Value

Feasibility and effectiveness of communication tools for addressing intimacy and sexuality in patients with cancer: a systematic review

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