Long-term improvement of quality of life in patients with breast cancer: supporting patient-physician communication by an electronic tool for inpatient and outpatient care

Purpose The effectiveness of a pathway with quality of life (QoL) diagnosis and therapy has been already demonstrated in an earlier randomized trial (RCT) in patients with breast cancer. We refined the pathway by developing and evaluating an electronic tool for QoL assessment in routine inpatient and outpatient care. Methods In a single-arm study, patients with breast cancer with surgical treatment in two German hospitals were enrolled. QoL (EORTC QLQ-C30, QLQ-BR23) was measured with an electronic tool after surgery and during aftercare in outpatient medical practices (3, 6, 9, 12, 18, and 24 months) so that results (QoL-profile) were available immediately. Feedback by patients and physicians was analyzed to evaluate feasibility and impact on patient-physician communication. Results Between May 2016 and July 2018, 56 patients were enrolled. Physicians evaluated the QoL pathway as feasible. Patients whose physician regularly discussed QoL-profiles with them reported significantly more often that their specific needs were cared for (p < .001) and that their physician had found the right treatment strategy for these needs (p < .001) compared with patients whose doctor never/rarely discussed QoL-profiles. The latter significantly more often had no benefit from QoL assessments (p < .001). Conclusion The QoL pathway with electronic QoL assessments is feasible for inpatient and outpatient care. QoL results should be discussed directly with the patient. Clinical trial information NCT04334096, date of registration 06.04.202

Colorectal cancer survivors’ long-term recollections of their illness and therapy up to seven years after enrolment into a randomised controlled clinical trial

Background As a consequence of effective treatment procedures, the number of long-term survivors of colorectal cancer is ever increasing. Adopting the method of a previous study on breast cancer patients, the goal of the present research was to investigate colorectal cancer patients’ recollections of their illness and treatment experiences up to seven years after they have been enrolled in a randomised controlled clinical trial on the direct improvement of quality of life (RCT DIQOL). Methods Colorectal cancer survivors in Bavaria, Germany were mailed a questionnaire on average 78·3 months after the start of their therapy and enrolment into RCT DIQOL. The questionnaire enquired about their worst experience during the colorectal cancer episode, positive aspects of the illness, and any advice they would give to newly diagnosed patients. Patient responses were categorised by two independent raters and cross-checked by a third independent rater. Frequencies of these categories were then quantitatively analysed using descriptive statistics. Results Of 146 remaining survivors initially enrolled in RCT DIQOL, 96 (66%) returned the questionnaire. The majority (33%) of statements regarding the worst experience was referring to “psychological distress”, followed by “indigestion and discomfort during defecation” (17%), and “cancer diagnosis” (16%). Among survivors with history of a stoma, the majority (36%) regarded “stoma” as their worst experience. With 45%, “change in life priorities” has been the most frequent positive category before “support by physicians/ nurses” (25%). 43% of the survivors deemed “fighting spirit” as most important advice to overcome the disease. Conclusion Even after many years, colorectal cancer survivors clearly remember experiences from the time of their illness. Echoing the results of the previous breast cancer survivors’ study, “psychological distress”, “change in life priorities” and “fighting spirit” emerged as prominent concepts. In addition, some aspects like the impact of a stoma are of specific importance for colorectal cancer survivors. These findings can be used to inform programmes to improve patient- and quality of life centred aftercare of tumour patients. Clinical trial information NCT04930016, date of registration 18.06.2021

Breast cancer survivors` recollection of their quality of life: Identifying determinants of recall bias in a longitudinal population-based trial

Background The recollections of survivors of breast cancer are an important source of information about the disease for their family, friends, and newly diagnosed patients. So far, little is known about these memories. This study investigated how accurately survivors of breast cancer remember their past quality of life (QoL) during the disease and if this memory is modified by women's present QoL and negative affect. Material and methods The longitudinal population-based study included 133 survivors of breast cancer (response rate 80%). Participants were asked for their present QoL and to recall their baseline QoL (EORTC QLQ-C30, QLQ-BR23) that had been assessed about seven years ago before discharge from hospital. The dependent variable was recall bias in ten QoL dimensions. Present QoL and negative affect (PANAS) were investigated as predictor variables. Results Overall, baseline QoL was retrospectively underrated on seven out of ten scales whereas no significant overestimation was found. In multiple linear regression analyses, controlling for confounders, a stronger underrating of QoL was significantly predicted by a lower present QoL on nine out of ten scales and by higher negative affect on six scales. Conclusions Survivors of breast cancer tend to underestimate their past QoL during the disease when asked about seven years later. Lower present QoL and higher negative affect contribute to this recall bias. This needs to be considered when interpreting retrospectively reported QoL data. Results are discussed in relation to theory of change or stability and mood congruency theory

Direct improvement of quality of life in colorectal cancer patients using a tailored pathway with quality of life diagnosis and therapy (DIQOL): study protocol for a randomised controlled trial

Background Medical treatment in patient-centred care in oncology is broadly managed and regulated in terms of guideline development, cancer centres, and quality assurance by cancer registries. In contrast to this quality management cycle (PDCA), there are no equal standards for patient-reported outcomes like quality of life (QoL). Therefore, the Tumour Centre Regensburg e.V., a population-based regional cancer registry covering a population of more than 2.2 million people in the Upper Palatinate and Lower Bavaria, Germany, designed and implemented a QoL pathway. In a complex intervention with QoL diagnosis and therapy (multidimensional therapeutic network), effectiveness for patients with breast cancer has been demonstrated. To provide local tailored QoL diagnosis and therapy to other cancer patients as well, external validity needs to be extended by adapting the QoL pathway to another tumour entity. Methods/Design The QoL pathway will be tested for colorectal cancer patients in a pragmatic randomised controlled trial. Two hundred twenty primary colorectal cancer patients, surgically treated in one of four hospitals, will be included. QoL is measured in all patients 0, 3, 6, 12, and 18 months after surgery (European Organisation for Research and Treatment of Cancer (EORTC) QLQ-C30, QLQ-CR29). In the intervention group, QoL scores are transformed into a QoL profile. This is sent to the coordinating practitioner (general practitioner, internist, or oncologist) with an expert report including treatment recommendations for QoL deficits. The control group receives routine follow-up care attending the guideline recommendations for colorectal cancer without profile or expert report. At the primary endpoint (12 months), the rates of patients with diseased QoL in both groups are compared. Discussion This randomised trial is the first complex intervention investigating the effectiveness of an intervention with QoL diagnosis and tailored QoL therapy in colorectal cancer patients. The results will show if this QoL pathway improves the patients’ QoL during follow-up care of their disease. Trial registration ClinicalTrials.gov, NCT02321813 (registered December 2014)

Results of paired t-Tests comparing follow-up QoL with baseline QoL and with recalled QoL on ten scales of the EORTC QLQ-C30, QLQ-BR23.

<p>Results of paired t-Tests comparing follow-up QoL with baseline QoL and with recalled QoL on ten scales of the EORTC QLQ-C30, QLQ-BR23.</p

Summary of measures including time points.

<p>Summary of measures including time points.</p

Baseline QoL, Follow-up QoL, and Recalled QoL on Ten Scales of the EORTC QLQ-C30, QLQ-BR23.

<p>Baseline = first questionnaire filled in 0 to 2 days before discharge from hospital; follow-up = about 7 years after baseline; recall = recollection of baseline QoL about 7 years later; GQ = global QoL; PF = physical functioning; RF = role functioning; EF = emotional functioning; CF = cognitive functioning; SF = social functioning; FA = fatigue; PA = pain; AS = arm symptoms; higher scores mean better QoL, reference values can be found in Hinz et al [<a href="http://www.plosone.org/article/info:doi/10.1371/journal.pone.0171519#pone.0171519.ref020" target="_blank">20</a>].</p

Breast cancer survivors’ recollection of their illness and therapy seven years after enrolment into a randomised controlled clinical trial

Background Little is known about the subjective experience of breast cancer survivors after primary treatment. However, these experiences are important because they shape their communication about their illness in everyday life, usage and acceptance of healthcare, and expectations of new generations of patients. The present study investigated this topic by combining qualitative and quantitative methods. Methods Breast cancer survivors in Bavaria, Germany were mailed a questionnaire up to seven years after enrolment into a randomised controlled clinical trial and start of their therapy. This enquired about their worst experiences during the breast cancer episode, positive aspects of the illness and any advice they would give to newly diagnosed patients. A category system for themes was systematically created and answers were categorised by two independent raters. Frequencies of key categories were then quantitatively analysed using descriptive statistics. In addition, local treating physicians gave their opinion on the response categories chosen by their patients. Results 133 (80 %) of 166 eligible patients who survived up to seven years returned the questionnaire. The most prominent worst experience reported by survivors was psychological distress (i.e. anxiety, uncertainty; prevalence 38 %) followed by chemotherapy (25 %), and cancer diagnosis (18 %). Positive aspects of the illness were reported by 48 % with the most frequent including change in life priorities (50 %) and social support (22 %). The most frequent advice survivors gave was fighting spirit (i.e. think positive, never give up; prevalence 42 %). Overall, physicians’ estimates of the frequency of these responses corresponded well with survivors’ answers. Conclusions Although physicians’ understanding of breast cancer patients was good, psychological distress and chemotherapy-related side effects were remembered as particularly burdensome by a substantial part of survivors. On the one hand, patients’ quality of life needs to be assessed repeatedly during medical follow-up to identify such specific complaints also including specific recommendations to the physician for targeted psychosocial and medical support. On the other hand the advices and positive aspects of the disease, reported by the survivors, can be used to promote positive ways of coping with the illness

Results of paired t-Tests comparing baseline QoL and recalled QoL on ten scales of the EORTC QLQ-C30, QLQ-BR23.

<p>Results of paired t-Tests comparing baseline QoL and recalled QoL on ten scales of the EORTC QLQ-C30, QLQ-BR23.</p