A new tool may be able to assist clinicians in discussing spiritual well-being with cancer patients who are receiving palliative care.
The final phase of the EORTC QLQ-SWB32, developed by the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Group, has been validated in 14 countries and 10 languages and can serve as a stand-alone measure for assessing spiritual well-being (SWB).
Comprising four scoring scales with 22 items, the measure is applicable to people with and those without any specific religious faith, the authors note. The tool should also be “manageable” in most palliative care settings and can be useful in studies of palliative and supportive care in which SWB is included as an outcome measure.
The authors add that the measure would also be of value prior to investigating interventions that seek to provide some type of spiritual care.
“There is a growing recognition that spiritual care is an important dimension of health care, particularly supportive and/or palliative care for cancer,” write the authors, led by Bella Vivat, PhD, senior research associate in the Marie Curie Palliative Care Research Department at University College London, United Kingdom.
They point out that it is “increasingly argued that spiritual care is not always well provided, if at all.”
Therefore, “tools which address spiritual issues may be useful for both initiating discussion around those issues and also assessing responses to palliative care interventions,” note Dr Vivat and her colleagues.
The article was published online August 4 in the European Journal of Cancer Care.
SWB is often not discussed with patients who are facing serious or life-threatening illnesses, and many practitioners are uncomfortable with the topic.
As previously reported by Medscape Medical News, a study that investigated discussions of spirituality in settings in which patients were receiving intensive care found that healthcare professionals rarely brought up the subject and often redirected the conversation when religious beliefs came up.
Even when family members consider themselves religious, goals-of-care conferences only included mention of spirituality 16.1% of the time.
The spiritual component of care is one that patients are asking for, noted Robert Klitzman, MD, professor of clinical psychiatry and director of the bioethics program at the College of Physicians and Surgeons at Columbia University in New York City, in a previous interview with Medscape Medical News. “It is extremely important to many patients with cancer and other chronic illnesses, and doctors need to be aware of that.”
Creating a Tool
The authors note that there is currently no gold standard for assessing the spiritual needs of cancer patients in the palliative setting, and no existing stand-alone measures of spiritual well-being have been developed for use in cross-cultural contexts and in multiple languages.
In developing the measure, relevant issues were identified, and the views of patients receiving palliative care as well as professional healthcare providers were obtained concerning those issues. The measure underwent pilot testing with patients receiving palliative care.
Pilot testing involved 113 cancer patients who were recruited from hospitals and hospices in six European countries and Japan.
In the current article, Dr Vivat and her team report on the final phase of the development of the SWB measurement tool, which included field testing and validation.
This phase included 451 patients with incurable or advanced cancer. The patients represented a wide range of cultures and geographic regions on four continents. Of this group, 54% were women, 188 were Christian, 50 were Muslim, and 156 reported no religious affiliation.
Most of the patients (288; 63.9%) were receiving active treatment at the time of recruitment into the study.
All participants completed a provisional 36-item SWB measure as well as the EORTC QLQ-C15-PAL, which is a modified, validated version of the EORTC QLQ-C30 core quality-of-life questionnaire for patients receiving palliative care. In addition, the cohort took part in a structured debriefing interview.
The authors assessed the scale structure and construct validity and compared it with the PAL with respect to how the two measures converged and diverged. Although the SWB measure was developed to use on its own, it was tested along with the PAL for validation purposes.
About half (53%) of the variation between the two measures were related to 22 items in four scoring scales ― Relationship With Self (RS), Relationships With Others (RO), Relationship With Someone or Something Greater (RSG), and Existential. Scores on the PAL global quality-of-life item and Emotional Functioning scale correlated weakly to moderately with those on the global SWB item as well as on two of the four SWB scales.
The 36-item provisional measure was subsequently revised to the 32-item SWB measure. This included 22 items in four scoring scales for all respondents: RO (six items), RS (five items), RSG (five items), and Existential (six items). In addition, it included a single-item scoring scale, Relationship With God (RG), for those who indicated that they currently believe or have previously believed in God or in an entity greater than themselves.
The final SWB tool includes eight items that are not scored. Two are items that determine whether the patient believes in God or a higher power. Patients who respond affirmatively are asked to complete the single-item RG scale. The remaining six items include “forgive myself” and “worried about important people,” two items that explore changes in feelings about life, and two that explore changes in beliefs.
This study was funded by the EORTC Quality of Life Group of the EORTC Charitable Association. The authors have disclosed no relevant financial relationships.
Eur J Cancer Care. Published online August 4, 2017. Abstract
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