New Patient-derived Questionnaire May Better Assess Quality of Life for Those With Hypoparathyroidism, Study Reports

A new questionnaire devised from complaints of patients with hypoparathyroidism may better assess quality of life and the characteristic symptoms of the disorder, according to a study.

The study, “The HPQ—Development and First Administration of a Questionnaire for Hypoparathyroid Patients,” was published in the journal JBMR Plus.

Among other complications, people with hypoparathyroidism may experience muscle cramps, tingling in the extremities, perioral (around the mouth) numbness, and cognitive and psychologic disturbances — all of which lead to a reduced quality of life.

Despite recent efforts that include European guidelines, a gold standard for assessing subjective symptoms in clinical practice is still lacking.

Several methods, including different questionnaires, have been used to characterize symptoms and clinical symptoms in patients with hypoparathyroidism. However, it remains unclear if the currently available generic questionnaires address all important aspects of a given disease.

As such, researchers from Germany set out to design a questionnaire that can assess the most relevant symptoms of hypoparathyroidism and evaluate its clinical usefulness.

Members of a German hypoparathyroidism self‐help group filled out three validated questionnaires — Symptom Checklist 90 (SCL‐90‐R), Giessen Complaint List (GBB), and von Zerssen Symptom List — and a general patient questionnaire (GPQ) during a meeting in 2013 to assess symptoms. This group included 65 patients with chronic postoperative hypoparathyroidism (mean average age of 52 years).

While not initially instructed to do so, patients commented on the different questionnaires. These comments were collected, reworded into questions, and renamed as the so‐called “self‐help‐group‐derived questionnaire.”

This questionnaire was then administered together with a well-established tool for health‐related quality of life — the 36‐Item Short Form Health Survey (SF‐36) — at the group’s annual meeting in 2015.

In comparison to controls without hypoparathyroidism who had undergone thyroid surgery and those with current or former hyperparathyroidism, analysis across the different questionnaires revealed more complaints in four areas: somatization, obsessive-compulsive symptoms, depression, and anxiety.

In addition, the SF‐36 scale showed that the self-help group had lower (worse) scores in general health perception, social functioning, emotional role functioning, and mental health. According to the GBB questionnaire, the group with hypoparathyroidism revealed more complaints than controls in areas related to pain in the limbs, exhaustion, cardiac health, and global discomfort.

As for the GPQ tool, concentration disturbance, exhaustion, sleep problems, back and neck pain, and sweating were important concerns for people with hypoparathyroidism.

Then, from more than 150 questions across all six questionnaires, the team filtered the relevant items and added two questions for depression, one for bodily health, and two for gastrointestinal issues — such as nausea and upset stomach, abdominal pain, or stomach cramps — to construct the new 40‐item “Hypoparathyroid Patient Questionnaire” (HPQ 40).

The HPQ 40 was pretested in healthy individuals and then administered over one year to patients with hypoparathyroidism and both control groups without the disorder.

Results showed five major complaint areas: pain and cramps, gastrointestinal symptoms, depression and anxiety, neurovegetative symptoms (including trembling muscles, weakness, and dizziness), and loss of vitality.

The questionnaire was then revised and shortened to 28 questions to avoid redundancy. Besides 23 items on five domains, this final version also addressed complications such as heart palpitations and numbness or tingling sensations.

“We present a new disease‐characteristic questionnaire for hypoparathyroidism patients,” the scientists wrote. “This questionnaire can be tested for usefulness in further clinical trials.”