On Suffering: Pathways to Healing and Health

9. How to Assess Suffering

9 * How to Assess Suffering Raw Data Collation and Interpretation of the masq The aim of contemporary medicine is to provide optimal care to patients based on objective scientific evidence. Raw data, that is, the actual numerical value designated by the patient for a specific item or the mean of a group of subscores in a particular section of the masq, provides an opportunity to clearly identify those areas of greatest importance to patients. The purpose of this chapter is to (a) illustrate the masq, (b) show how to calculate raw data scores, (c) explain criteria for use of either a “long” or a “short” form and, (d) show the usefulness of raw data scores in clinical practice. Measuring and Assessing Suffering: The masq The masq is a self-administered questionnaire designed to evaluate responses on a scale of 1 to 5. As discussed in chapter 5, a score of 5 on any item indicates the most negative response. The masq is designed to indicate distress in four domains : (1) Suffering, (2) Work Beliefs, (3) Self-Efficacy, and (4) Coping. Raw data results can be recorded using a comprehensive long format (“long form”), which indicates the responses for each item, or the short form, which presents a summary of the raw data for each of the domains. Further, if suffering per se is the only domain of interest/concern for the clinician, then a short form entitled “suffering summary” is available. In general, short forms are used when the prime clinical objective is diagnosis. When treatment planning is the goal, then the long form is most useful, for it clearly identifies not only the suffering component but also the impact of suffering on personhood issues such as work beliefs, self-efficacy, and coping beliefs. In some instances, a physician may wish to determine how a patient’s scores relate to other persons with chronic illness. To do so, normative data scores must be calculated from a series of diverse patient samples. Clinicians can compare an individual patient’s results to other comparable groups to best gauge the severity of response. Normative data scores are particularly important in those cases where it is evident that pain is not the prime concern. A description of how to score the results using a normative data analysis is provided in chapter 10. How to Assess Suffering 129 Administering the masq Patients are given an information sheet that describes the treatment plans to be administered and consent for treatment is given. If the information to be collected is to be used for research purposes, the purpose of the study and methods to be employed must be given to individuals both verbally and in written form. Patients are reassured that should they not wish to be part of the research, future care will not be compromised. Issues of confidentiality are clearly defined both in the clinical setting and research program. Consent forms designed specifically for treatment and others for research are signed and witnessed. Contact telephone numbers are provided in case of emergency or if patients have further questions. The instruction sheets are given to patients prior to the test day so that the patient may ask questions before agreeing to participate in the study. After these preliminary documents are explained and consent obtained, instructions for scoring the masq must be brief and concise. The following instructions to patients address this point. Instructions to Patients Patients are asked to circle the response to each question that best describes how they feel currently, to answer all the questions, and not to add up subscores. Clinicians are advised to not use the word “suffering” when introducing the questionnaire to patients because this terminology introduces the possibility of bias of response, as “suffering” per se has many doctrinal associations both religious and societal. The masq adopts a secular stance and as a result neither includes nor excludes past understandings of the concept of suffering. Scoring of the questionnaire usually takes between 10 and 15 minutes and provides the clinician with immediate results. The Questionnaire MASQ I.D.#     NAME    DATE PHONE     D.O.B.     GENDER ADDRESS     CITY    POSTAL CODE DIAGNOSIS INSTRUCTIONS: 1. Please answer all questions. 2. Only circle one response. 3. Circle the response that best describes how you feel now. 130 Identifying Those Who Suffer Part A Please select the response that most describes how you feel now. Circle the number on the scale for each...