Quality of Life Research

Comprehensive assessment of pain characteristics, quality of life, and pain management in cancer patients: a multi-center cross-sectional study

Abstract Introduction Pain is the most common complaint among cancer patients, significantly impairing their health-related quality of life (HRQOL). There is limited evidence on the characteristics of pain among cancer patients in Nepal with low-resource settings. Objectives The primary objective of this study was to evaluate the clinical characteristics of pain, factors influencing pain intensity, and the association of pain severity with quality of life (QoL) among cancer patients. Secondary objectives included investigating perceived barriers to pain management and medication adherence among these patients. Methods This multi-center, cross-sectional study enrolled adult patients (over 18 years old) with reported cancer diagnoses experiencing pain. Socio-demographic characteristics (e.g., age, gender, educational status), clinical characteristics (e.g. cancer diagnosis, staging), and pain characteristics (e.g., duration, type, location, medicines used for pain management, etc.) were recorded. Outcomes were assessed using the Numeric rating scale (NRS), Pain management Index, European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire, Barriers Questionnaire II, Medication Adherence Rating Scale, and Hospital Anxiety and Depression Scale. Results Four hundred and eight patients participated in the study. The mean ± SD age was 54.87 ± 15.65, with 226 patients (55.4%) being female. The most common cancer diagnoses were cervical (17.6%), lung (11.8%), and colon/rectum (12.0%) cancers. The most common pain locations were the head and neck (27.0%); a majority (55.6%) reported pain duration of more than 3 months. Nociceptive pain was reported by 42.4% of patients; the mean ± SD of NRS was 4.31 ± 2.69, with 32.4% of patients experiencing moderate pain. Patients with mixed pain type (B = 1.458, p < 0.001) or pain in multiple sites (B = 1.175, p < 0.001), lower Karnofsky Performance Status (KPS) (B = -1.308, p < 0.001), and specific cancer diagnoses such as prostate (B = -2.045, p = 0.002), pancreatic (B = 1.852, p = 0.004), oesophageal (B = 1.674, p = 0.012), and ovarian cancer (B = 1.967, p = 0.047), experienced varying degrees of increased NRS score. The combined chemotherapy and radiotherapy treatment modality was associated with a lower NRS score (B = -0.583, p = 0.017). A significant inverse relationship was observed between pain severity and global health status/QoL (B = -37.36, p < 0.001. Key barriers to pain management included moderate perceptions of physiological effects, communication issues between doctors and patients, and concerns about the harmful effects of pain medicine. The prevalence of non-adherence to pain medications was 13.97%. Conclusion In conclusion, this study highlights the multi-faceted nature of pain management and QoL for cancer patients in Nepal with low-resource settings. These findings underscore the multifactorial nature of pain perception in cancer patients, with mixed pain types, pain in multiple sites, lower KPS, and specific cancer diagnoses, all contributing significantly to pain severity. Additionally, pain severity was associated with declining QoL. These findings contribute valuable insights into the complex aspects of cancer pain and its broader implications for the well-being of patients, offering a foundation for targeted interventions and improved pain management strategies in the context of cancer care in low-resource settings.

Sexual quality of life after gynaecological cancer: what young women want

‘The disease ruined my life’: a qualitative study of the quality of life in women with uterine fibroids

Symptomatic uterine fibroids are difficult to live with because affected women experience many clinical manifestations that can impact their quality of life. The purpose of the current study was to explore the quality of life in women with uterine fibroids. This qualitative study was conducted on a purposive sample of women with uterine fibroids, using conventional content analysis based on Granheim and Lundman's approach. The steps included transcribing verbatim immediately after conducting each interview, reading the entire text to obtain an overall concept, identifying semantic units, coding, classifying similar codes into more comprehensive subcategories and categories, and extracting the main themes. Data were collected through semi-structured, in-depth individual interviews with 15 patients with uterine fibroids who were referred to the health centers and a teaching hospital of Zanjan, Iran, from September 2022 to July 2023. The data collection was continued until data saturation. Twenty-five eligible patients were invited to participate in the study, and 15 of them accepted, resulting in an agreement rate of 60%. While women expressed devastating experiences due to the disease, they also indicated some positive elements in their day-to-day living. Overall, four themes emerged from the data analysis as follows: health challenges, determination for an optimal lifestyle, perceived social support, and religious practice. The impact of uterine fibroids on quality of life is complex, extending beyond physical, psychological, and social effects. In addition to these known dimensions, spirituality and perceived support are also crucial. Addressing these dimensions is essential for improving quality of life of women with uterine fibroids.

Patient quality of life and caregiver experiences in ovarian cancer: How are they related?

Patients with ovarian cancer and their spousal caregivers report similarities in health-related quality of life (HRQoL) and experiences throughout the cancer process. Previous research has reflected these shared experiences, demonstrating caregivers' capacity to accurately rate their patient-partner's HRQoL as a proxy. In response, this study examines associations between caregivers' perceptions of their patient-partner's HRQoL and their own caregiving responsibilities, consequences to well-being, and desired assistance from the healthcare system. This study will be beneficial when developing supports to assist caregivers throughout the cancer journey. Using a cross-sectional survey design, spousal caregivers (N = 82) of patients with ovarian cancer completed measures on perceived patient HRQoL and caregiver experiences. Correlation analyses determined medical and sociodemographic covariates. A multivariate multiple regression was conducted using four proxy HRQoL functioning subscales and three factors of reported experiences as caregivers in cancer. Post-hoc univariate regression analyses were run on significant factors to assess the associations that exist. Caregiver-perceived patient physical functioning was significantly associated with more caregiving tasks after controlling for education, age, and stage of ovarian cancer, but no other HRQoL functioning scale (i.e., role, emotional, social) was associated with caregiver experiences. The study provides a unique perspective into the caregiver experience by attending to interpersonal factors in relation to caregiver experiences. Results may be able to guide interventions aimed at supporting caregivers through the cancer process by offering more assistance with tasks as their partner's physical condition worsens.

Sexual health in Belgian cervical cancer survivors: an exploratory qualitative study

To assess experiences of sexuality and of receiving sexual healthcare in cervical cancer (CC) survivors. A qualitative phenomenological study using semistructured one-on-one interviews was conducted with 15 Belgian CC survivors recruited in 5 hospitals from August 2021 to February 2022. The interviews were audiotaped and transcribed verbatim. Data were analyzed using inductive thematic analysis. COREQ and SRQR reporting guidelines were applied. Most participants experienced an altered sexuality after CC treatment with often long-term loss/lack of sex drive, little/no spontaneity, limitation of positions to avoid dyspareunia, less intense orgasms, or no sexual activity at all. In some cases, emotional intimacy became more prominent. Physical (vaginal bleeding, vaginal dryness, dyspareunia, menopausal symptoms) and psychological consequences (guilt, changed self-image) were at the root of the altered sexuality. Treatment-induced menopause reduced sex drive. In premenopausal patients, treatment and/or treatment-induced menopause resulted in the sudden elimination of family planning. Most participants highlighted the need to discuss their altered sexual experience with their partner to grow together toward a new interpretation of sexuality. To facilitate this discussion, most of the participants emphasized the need for greater partner involvement by healthcare providers (HPs). The oncology nurse or sexologist was the preferred HP with whom to discuss sexual health. The preferred timing for information about the sexual consequences of treatment was at treatment completion or during early follow-up. Both treatment-induced physical and psychological experiences were prominent and altered sexuality. Overall, there was a need for HPs to adopt proactive patient-tailored approaches to discuss sexual health.

The quality of life of frequently vs. infrequently screened HPV vaccinated women

Abstract Purpose Cervical lesions caused by human papillomavirus (HPV) are related to decreased quality of life (QoL) of women. Also, cervical cancer (CC) screening can cause psychological adverse effects. It has been assumed that by decreasing the HPV-related disease burden, HPV vaccinations would increase the QoL. This study compares the effect of CC screening on QoL of HPV vaccinated women in two different screening protocols. Methods A total of 753 HPV16/18 vaccinated women were randomized to frequent (22/25/28 years of age) and infrequent (28 years of age) CC screening arms. QoL questionnaires (EQ VAS, RAND 36, amended CECA 10) were sent at the age of 28. Results Median EQ VAS scores were 80 (Q1–Q3 75–90) in both screening arms. Mean RAND 36 scores of frequently and infrequently screened women were 78.13/81.64 in Physical role functioning domain and, respectively, 77.93/80.18 in Pain, 69.10/69.12 in General Health, 54.67/53.61 in Energy, 83.72/85.11 in Social functioning, 69.53/69.68 in Emotional role functioning, and 68.16/69.29 in Emotional well-being domain. Among women with a self-reported history of Pap cytology abnormalities, overall mean scores of amended CECA 10 were 69.52/72.07, and among women with a self-reported history of genital warts, 60.09/66.73, respectively. Conclusion There was no significant difference in the QoL of HPV vaccinated women between the two CC screening arms. Women were mostly satisfied with the screening experience despite the screening frequency. This information is important for the future screening program planning as we need to reach the best possible balance with screening benefits and harms. Trial registration number NCT02149030, date of registration 29/5/2014.

Microbiome impacts quality of life in patients with endometrial cancer and benign gynecological conditions

Patients with endometrial cancer (EC), a prevalent gynecologic cancer in the United States, and benign gynecological conditions such as fibroids and endometriosis, experience poor quality of life (QOL). Organisms in vaginal and rectal microbiomes have been previously linked to both adverse symptoms and gynecologic disease. Using gastrointestinal, mental, physical, and sexual health symptoms as a proxy for QOL, we explored QOL relationships with vaginal and rectal microbes between patients with EC and benign gynecological conditions. Patients undergoing hysterectomy for benign or oncological indications at a single center completed QOL surveys preoperatively. The operating surgeon collected vaginal and rectal swabs prior to surgery. Survey and microbiome data were analyzed separately and then correlated utilizing MicrobiomeAnalyst, analysis of compositions of microbiomes with bias correction (ANCOM-BC), and GraphPad Prism 10.2.3. Sexual interest and Vaginal Assessment Scale (VAS) scores were higher in the benign group. Vaginal species richness was higher in the EC group. Vaginal Porphyromonas negatively correlated to sexual interest in all patients, while Dialister B positively correlated to sexual interest in the benign group. Patients with EC and worse vaginal atrophy had increased vaginal L. iners, despite adjustment for menopausal status. In the rectal microbiome, Gastranaerophilales positively correlated to good mental health and Verrucomicrobiales negatively correlated to vulvar symptoms. Identifying microbiome signatures that impact QOL in patients with EC and benign gynecological conditions increases understanding of how microbes may influence patient wellbeing. We offer preliminary findings for foundational knowledge for future opportunities on improvement of QOL through microbiome modulation.

Health-related quality of life analysis in ovarian cancer clinical trials involving PARP inhibitors: a critical methodological perspective

The poly (ADP-ribose) polymerase inhibitors (PARPi) have yielded significant clinical benefits as maintenance therapy in women with newly diagnosed and relapsed platinum-sensitive advanced ovarian cancer. These drugs were approved based on progression-free survival, the primary endpoint of their respective pivotal trials. Health-related quality of life (HRQoL) and/or patient-reported outcomes were included in these trials as a secondary exploratory endpoint. Nevertheless, many weaknesses in the analysis of HRQoL across these trials can be noticed. Heterogeneity and suboptimal HRQoL analysis in oncology trials contribute to misconceptions about this endpoint among oncologists and prevent quality of life as being an endpoint used for approvals. In this article, we discuss these HRQoL results from a methodological perspective and propose some solutions for improvement that could be used by regulatory and academic institutions running ovarian cancers trials. Notably, we suggest to measure and analyze HRQoL data after disease progression, to focus dedicated papers on the statistical analyses of HRQoL recommended by the SISAQOL consortium (linear mixed model for repeated measures and time-to-event approaches) and to communicate on available guidelines to ensure compliance with best international practices regarding the measurement and analysis of HRQoL.