NUR5063 Module 5 patient experience measurement plan example

Asking in Nepali, Out Loud: A Plan to Measure Patient Experience and Patient-Reported Outcomes for Bhutanese Nepali Adults With Diabetes

Student Name

American College of Education

NUR5063: Patient-Centered Care

Module 5 Assignment

Instructor Name

February 9, 2027

Why the Current Survey Cannot Answer the Question

The composite hospital's diabetes center already receives patient experience scores. They come from a mailed survey in English and Spanish, and in the past year 3 of the center's 412 Bhutanese Nepali patients returned one. The changes made in this course, the picture-based fasting tool, the family teaching session and the community health worker, were all designed for the group the current survey cannot hear. Without a different approach, the center will have no way to know whether those changes are experienced as patient-centered care by the people who receive them.

Patient experience deserves measurement in its own right. Anhang Price et al. (2014) argued that well-designed patient experience surveys measure aspects of quality that only patients can report, such as whether they were listened to and whether things were explained, and are distinct from satisfaction ratings. A systematic review of 55 studies found consistent positive associations between patient experience and both clinical effectiveness and patient safety across many settings (Doyle et al., 2013). Measuring experience is not a courtesy added to the real outcomes; for this population it is the one source that can say whether the redesign reached them.

What Will Be Measured

The working definition from Module 1 has four parts: the patient is known as a person, decisions are shared, the family is involved as the patient wishes, and care is coordinated across settings. Each part needs at least one measure, and the plan adds one patient-reported outcome because good experience should eventually change how patients live with the disease.

Shared decisions will be measured with CollaboRATE, a three-item measure of how much effort the clinician made to help the patient understand the health issue, to listen to what mattered most and to include that in choosing what to do next. Its developers found that terms such as decisions, options and preferences confused patients during cognitive testing and wrote the items without them, producing a measure that can be completed in under 30 seconds (Elwyn et al., 2013). That plain wording makes it well suited to translation and to being read aloud.

Coordination across the hospital-to-home transition will be measured with the Care Transitions Measure, whose 15-item version showed high internal consistency and reliability and distinguished patients who did and did not return to the emergency department or hospital for the same condition (Coleman et al., 2005). The plan uses the full version for the first year to see which items matter most to this population.

Diabetes distress, the patient-reported outcome, will be measured with the PAID-5, a five-item short form of the Problem Areas in Diabetes scale that recognized diabetes-related emotional distress with 94% sensitivity and 89% specificity (McGuire et al., 2010). Being known as a person and family involvement have no validated measure that fits this setting, so the center will add three local items, such as whether the patient was asked who helps at home, and will report them separately from the validated scales.

Translation and Cultural Adaptation

No validated Nepali versions of CollaboRATE or the Care Transitions Measure are known to the center, so each will be adapted using the process recommended by Beaton et al. (2000). Two independent translators, one aware of the measure's purpose and one not, will produce Nepali versions, which will be combined into one. Two different translators who have not seen the original will translate it back into English, and a committee including the diabetes educator, the community health worker, an interpreter and two community members will compare every version and resolve differences in meaning, not just in words. The pre-final version will then be tested with patients.

Pretesting will use cognitive interviews with 12 patients, half of whom cannot read. Each will hear the items and explain in their own words what each question is asking. Items that are misunderstood will be revised and tested again. The PAID-5 will go through the same process even though other language versions of the full scale exist, because a phrase about worry or guilt can carry very different meaning across cultures.

Administration, Sampling and Analysis

Because many patients cannot read, every measure will be read aloud in Nepali by a trained interviewer who is not involved in the patient's care, since patients may be reluctant to criticize care to the person who gave it. CollaboRATE will be asked by telephone within three days after a diabetes center visit, the Care Transitions Measure seven to fourteen days after discharge, and the PAID-5 at enrollment and every six months. The patient chooses whether a family member may listen, and the interviewer records who was present.

The center will attempt every eligible Bhutanese Nepali patient for the first year, since the numbers are small, and will run the same measures in English and Spanish for a random sample of other patients so that results can be compared across language groups. CollaboRATE will be reported as the percentage of patients giving the top score on all three items, the scoring its developers recommend, the Care Transitions Measure as a mean score, and the PAID-5 as the percentage above its distress cutoff. Results will be shown each quarter to the program working group described in Module 4, including its community members, and open comments will be summarized alongside the scores.

Each measure also has a decision attached, so that the data lead somewhere. If fewer than half of Bhutanese Nepali patients give CollaboRATE's top score on all three items after six months, the diabetes educator will observe a sample of visits to see whether the fasting tool and the explanatory model questions are actually being used. If the Care Transitions Measure scores of patients who had a family teaching session are no higher than those of patients who did not, the working group will listen to recordings of the interviews for the items that differ and revisit the teaching. If more than a third of patients score above the PAID-5 cutoff, the center will build a referral pathway to a counselor who speaks Nepali and will ask the community association which local services its members already trust. Setting these thresholds now, before any data arrive, keeps the team from explaining away disappointing results later.

Limits

Spoken administration may produce higher scores than written surveys, because people are often more positive when speaking to someone, so comparisons with the mailed survey scores of other patients will be made only between groups surveyed the same way. Translated measures will not be formally validated in this population until enough data exist to test their reliability. Survey scores also miss patients who decline or cannot be reached, often those with the worst experiences, so the community health worker's notes on patients who drop out will be reviewed alongside the numbers. The final module combines these measures with the changes from earlier modules into one improvement proposal.

References

Anhang Price, R., Elliott, M. N., Zaslavsky, A. M., Hays, R. D., Lehrman, W. G., Rybowski, L., Edgman-Levitan, S., & Cleary, P. D. (2014). Examining the role of patient experience surveys in measuring health care quality. Medical Care Research and Review, 71(5), 522-554. https://doi.org/10.1177/1077558714541480

Beaton, D. E., Bombardier, C., Guillemin, F., & Ferraz, M. B. (2000). Guidelines for the process of cross-cultural adaptation of self-report measures. Spine, 25(24), 3186-3191. https://doi.org/10.1097/00007632-200012150-00014

Coleman, E. A., Mahoney, E., & Parry, C. (2005). Assessing the quality of preparation for posthospital care from the patient's perspective: The care transitions measure. Medical Care, 43(3), 246-255. https://doi.org/10.1097/00005650-200503000-00007

Doyle, C., Lennox, L., & Bell, D. (2013). A systematic review of evidence on the links between patient experience and clinical safety and effectiveness. BMJ Open, 3(1), Article e001570. https://doi.org/10.1136/bmjopen-2012-001570

Elwyn, G., Barr, P. J., Grande, S. W., Thompson, R., Walsh, T., & Ozanne, E. M. (2013). Developing CollaboRATE: A fast and frugal patient-reported measure of shared decision making in clinical encounters. Patient Education and Counseling, 93(1), 102-107. https://doi.org/10.1016/j.pec.2013.05.009

McGuire, B. E., Morrison, T. G., Hermanns, N., Skovlund, S., Eldrup, E., Gagliardino, J., Kokoszka, A., Matthews, D., Pibernik-Okanović, M., Rodríguez-Saldaña, J., de Wit, M., & Snoek, F. J. (2010). Short-form measures of diabetes-related emotional distress: The Problem Areas in Diabetes Scale (PAID)-5 and PAID-1. Diabetologia, 53(1), 66-69. https://doi.org/10.1007/s00125-009-1559-5