Holistic assessment of cancer-related fatigue after breast cancer - Working towards monitoring and personalized treatment advice
Kim Grootjans-Wijlens is a PhD student in the Department of Biomedical Signals and Systems. (Co)Promotors are prof.dr. M.M.R. Hutten and dr. A. Witteveen from the Faculty of Electrical Engineering, Mathematics and Computer Science and dr. C. Bode from the Faculty of Behavioural Management and Social Sciences.
Cancer-related fatigue (CRF) is one of the most reported late and long-term effects after breast cancer. CRF is a complex, multidimensional symptom that severely impairs quality of life (QoL). When CRF persists for more than three months after completion of breast cancer treatment, treatment for CRF is required to reduce its impact. Treatment with different treatment concepts, e.g., physical activity and psychological, are available and have shown effectiveness on group level. However, the treatments are not available for everyone or do not lead to improvement of CRF for every individual. Effective treatment should target the underlying perpetuating factors and align with the patient’s preferences for treatment attributes. Patients express strong unmet needs in the management of CRF, emphasizing the need for personalized treatment advice in addition to efficacy and availability.
Therefore, the overall aim was to holistically assess the individual’s needs, the experience of CRF, and the preferences for CRF treatment attributes. For the holistic assessment, validity and reliability are important. Consequently, the holistic assessment of cancer-related fatigue (HA-CRF) questionnaire was developed, validated, and tested to assess the individual’s needs and experience of CRF in daily life. Next to this, a survey was developed to assess the patients’ preferences for CRF treatment attributes. This thesis discusses the following topics:
1) Developing a holistic assessment of cancer-related fatigue (HA-CRF) questionnaire.
2) Validation of the HA-CRF questionnaire through face and content validity.
3) Assess the feasibility and usability for implementation of the HA-CRF questionnaire in daily life.
4) Assessment of the patients’ preferences for CRF treatment attributes.
To provide a personalized treatment advice for CRF, the data of the holistic assessment and the preferences for treatment attributes should be combined.
Chapter 1 outlines the background as well as the research objectives of this thesis.
Chapter 2 presents a systematic review of the psychological coping factors associated with CRF in breast cancer patients and survivors, and provides a preliminary heuristic model. This model provides insight into the factors that hinder or facilitate CRF, which can be targeted during treatment for CRF. Psychological coping should be an essential component during treatment for CRF. Nurturance and optimism were negatively associated with cognitive fatigue. Sense of coherence was negatively associated with cognitive fatigue and total fatigue. Reassurance of worth was negatively associated with total fatigue, whereas subjective/perceived stress, meaning-focused coping, and breast-related stereotype threat were positively associated with total fatigue. Significant relationships between coping strategies, physical CRF and emotional CRF were not found in the seven included studies.
In Chapter 3, we introduce the first holistic patient profile for CRF, consisting of the experience of CRF, impact and consequences, coping, personality and CRF treatment. This holistic patient profile was based on group interviews with breast cancer patients, survivors, and interviews with healthcare professionals. The multidimensionality of CRF, which consists of physical, cognitive and emotional fatigue, was acknowledged by all participants. This emphasizes the need to holistically assess the patient. The profile being similar for patients and healthcare professionals can be seen as an indication of validity.
A novel method to develop a holistic assessment questionnaire is presented in Chapter 4 highlighting the importance of a thorough construct definition on the element level that should provide relevant information for the intended use of the questionnaire. The operationalization of the holistic patient profile for CRF was presented as a case. The HA-CRF questionnaire consists of four themes: CRF experience, day pattern, social health and coping. The HA-CRF questionnaire contains 72 items, which were based on 21 validated questionnaires. Although holistic assessment questionnaire development is a time-consuming process, it is essential to be able to provide a personalized treatment advice based on the HA-CRF questionnaire and thereby adequate support late and long-term effects of cancer treatment such as CRF.
The newly developed HA-CRF questionnaire requires validation and testing before it can be implemented into clinical practice, as it should be adequate in providing personalized treatment advice for CRF. To be able to use the information provided by the HA-CRF questionnaire for the treatment advice, the HA-CRF questionnaire was provided by an application so that patients could complete it themselves on their mobile phone, and the answers were digitally accessible. In Chapter 5, we show that the HA-CRF questionnaire has good face and excellent content validity indicated by breast cancer survivors and healthcare professionals.
As the intended use of the HA-CRF questionnaire is to monitor CRF and provide personalized treatment advice for CRF after breast cancer, the feasibility and usability were assessed in daily life during a monitoring period of four weeks. After usage, breast cancer survivors provided suggestions to tailor the HA-CRF questionnaire and application for use in daily life. Chapter 6 shows high completion rates but low adherence to the strict monitoring schedule. Therefore, it is important to align the individual’s needs to the intended use of the HA-CRF questionnaire.
Next to the needs of patients experienced CRF, preferences should also be taken into account for the personalized treatment advice. Chapter 7 points out that patients show a high heterogeneity in preferences for treatment attributes. Both the preferences between attributes (e.g., no costs compared to treatment duration) as well as within varied per patient (e.g., sessions of ten minutes instead of one hour). The overall preference for attributes was expressed in the following order: no costs, contact with therapist, proven effective, ten minute sessions, psychosocial, contact with peers, six to twelve weeks, daily sessions, and not anonymous.
Chapter 8 contains the general discussion and elaborates on the main findings of this thesis, indicates the strength and limitations of our research, provides implications for clinical practice (breast cancer survivors and healthcare professionals), and recommendations for future research. The major strength of this thesis is the development of the first holistic assessment questionnaire for CRF with active involvement of breast cancer patients, survivors, and healthcare professionals. Due to the unique construct description of CRF, not all psychometric properties can be evaluated. New methods should be developed to evaluate construct and convergent validity that are suitable for holistic assessment questionnaires. Moreover, this thesis emphasizes the importance of raising awareness and understanding of CRF by breast cancer survivors and their environment. Healthcare professionals should also be aware of the numerous breast cancer survivors experiencing CRF, the impact of CRF on their lives, and the factors perpetuating CRF can be targeted during treatment. The development process of the holistic assessment questionnaire could serve as a blueprint to assess the needs of cancer survivors and provide adequate support.
In conclusion, to assess the individual’s needs and experience of CRF, we developed the first holistic assessment of cancer-related fatigue (HA-CRF) questionnaire. Additionally, we developed a survey to assess preferences for CRF treatment attributes. Both questionnaires were developed based on extensive input from both (former) patients with breast cancer and healthcare professionals, and a thorough literature review. The HA-CRF showed good face and excellent content validity, and provided useful suggestions for implementation into the daily life of breast cancer survivors. The data collected with the HA-CRF questionnaire, and the preference survey could inform decision rules to develop a personalized treatment advice for CRF. Monitoring CRF and the personalized treatment advice has the potential to support breast cancer survivors and facilitate shared decision-making by aligning treatment referral with individual needs and preferences. Future research is needed to develop and validate the personalized treatment advice and to explore the potential of using the HA-CRF questionnaire for CRF monitoring and adaptation to user-specific contexts.
