Background
Methodology
Data analysis
Results
Participant characteristics
Participant characteristics | Total (n = 16) |
---|---|
Gender, n(%) | |
Female | 14 (87.5) |
Male | 2 (12.5) |
Age | |
Mean (SD) | 51.5 (11.7) |
Median | 54.5 |
(Range) | (29–69) |
Marital status, n(%) | |
Married | 9 (56.2) |
Partnered | 3 (18.8) |
Divorced | 4 (25.0) |
Race/ethnicitya, n(%) | |
White/Caucasian | 15 (93.8) |
Hispanic/Chicano/Latino | 1 (6.3) |
Middle Eastern/Arab | 1 (6.3) |
Education, n(%) | |
High school or equivalent | 2 (12.5) |
Some college | 1 (6.3) |
College or university graduate | 5 (31.3) |
Graduate or professional school | 8 (50.0) |
Work status, n(%) | |
Work full-time for pay | 4 (25.0) |
Work part-time for pay | 1 (6.3) |
Not working | 5 (31.3) |
Retired | 6 (37.5) |
Source of HP n(%) | |
Post-surgical | 13 (81.3) |
Idiopathic | 2 (12.5) |
Genetic | 1 (6.3) |
Duration of diagnosis (in years) | |
Mean (SD) | 15.0 (9.9) |
Median | 12.5 |
(Range) | (4.0–39.5) |
Number of comorbidities | |
Mean (SD) | 5.1 (3.3) |
Median | 4.0 |
(Range) | (1–14) |
Most frequently reported medical conditionsa, n(%) | |
Hypothyroidism | 14 (87.5) |
Hypertension | 7 (43.8) |
Obesity | 6 (37.5) |
Chronic kidney disease | 5 (31.3) |
Sleep apnea | 5 (31.3) |
Stomach or intestinal problems | 5 (31.3) |
Chronic back pain | 4 (25.0) |
Kidney stones | 4 (25.0) |
Reflux disease | 4 (25.0) |
Current severity of HP symptoms (self-report), n(%) | |
Very Mild | 1 (6.3) |
Moderate | 12 (75.0) |
Between Moderate and Severe | 1 (6.3) |
Severe | 2 (12.5) |
Medications and supplements currently used to treat or manage HPa, n(%) | |
Calcium supplements | 14 (87.5) |
Vitamin D supplementsb | 14 (87.5) |
OTC Vitamin D | 8 (50.0) |
Prescription Vitamin D | 11 (68.8) |
Forteo | 3 (18.8) |
Natpara (PTH [1–84]) | 6 (37.5) |
TransCon™ PTH | 2 (12.5) |
Hydrochlorothiazide (HCTZ) | 5 (31.3) |
Magnesium supplements | 8 (50.0) |
Comprehension of instructions
Instruction, n(%) yes | Clearly understood? (n = 16) |
---|---|
Instruction 1: primary instruction. This survey asks for your views about your health. This information will help keep track of how you feel and how well you are able to do your usual activities. Thank you for completing this survey! For each of the following questions, please select the one response that best describes your answer | 16 (100.0) |
Instruction 2: Role—Physical and Role—Emotional domains. During the past week, how much of the time have you had any of the following problems with your work or other regular daily activities? | 16 (100.0) |
Instruction 3: Mental Health and Vitality domains. This question is about how you feel and how things have been with you during the past week. Please give the one answer that comes closest to the way you have been feeling | 13 (81.3) |
Instruction 4: General Health domain. How TRUE or FALSE is the following statement for you? | 15 (93.8) |
CD interview guide question regarding instructions | |
Were you able to understand and follow the instructions for each section of the survey? | 15 (93.8) |
Item comprehension, relevance, importance, and sensitivity to change
Domain/Item, n(%) yes | Clearly understood? (n = 16) | Relevant to experience with HP? (n = 16) | Important aspect of how HP affects functioning and well-being? (n = 16) | If relevant, would response change if HP improved or worsened?a |
---|---|---|---|---|
Physical functioning | ||||
Does your health now limit you in… | ||||
Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports | 16 (100.0) | 16 (100.0) | 14 (87.5) | 12/16 (75.0) |
Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling, or playing golf | 16 (100.0) | 16 (100.0) | 14 (87.5) | 14/16 (87.5) |
Lifting or carrying groceries | 16 (100.0) | 13 (81.3) | 12 (75.0) | 13/13 (100.0) |
Climbing several flights of stairs | 16 (100.0) | 14 (87.5) | 13 (81.3) | 12/14 (85.7) |
Climbing one flight of stairs | 16 (100.0) | 13 (81.3) | 13 (81.3) | 11/13 (84.6) |
Bending, kneeling, or stooping | 16 (100.0) | 10 (62.5) | 10 (62.5) | 7/10 (70.0) |
Walking more than a mile | 16 (100.0) | 15 (93.8) | 13 (81.3) | 14/15 (93.3) |
Walking several hundred yards | 16 (100.0) | 14 (87.5) | 14 (87.5) | 14/14 (100.0) |
Walking one hundred yards | 16 (100.0) | 13 (81.3) | 12 (75.0) | 12/13 (92.3) |
Bathing or dressing yourself | 16 (100.0) | 11 (68.8) | 8 (50.0) | 11/11 (100.0) |
Role—physical | ||||
During the past week, how much of the time have you had any of the following problems with your work or other regular daily activities? | ||||
Cut down on the amount of time you spent on work or other activities as result of your physical health | 16 (100.0) | 16 (100.0) | 15 (93.8) | 15/16 (93.8) |
Accomplished less than you would like as a result of your physical health | 16 (100.0) | 16 (100.0) | 15 (93.8) | 15/16 (93.8) |
Were limited in the kind of work or other activities as a result of your physical health | 14 (87.5) | 14 (87.5) | 13 (81.3) | 13/14 (92.9) |
Had difficulty performing the work or other activities as a result of your physical health (for example, it took extra effort) | 16 (100.0) | 16 (100.0) | 16 (100.0) | 16/16 (100.0) |
Bodily pain | ||||
How much bodily pain have you had during the past week | 16 (100.0) | 16 (100.0) | 14 (87.5) | 16/16 (100.0) |
During the past week, how much did pain interfere with your normal work (including both work outside the home and housework) | 16 (100.0) | 15 (93.8) | 15 (93.8) | 15/15 (100.0) |
General health | ||||
In general, would you say your health is… | 16 (100.0) | 16 (100.0) | 12 (75.0) | 16/16 (100.0) |
How TRUE or FALSE is the following statement for you? | ||||
I seem to get sick a little easier than other people | 16 (100.0) | 10 (62.5) | 10 (62.5) | 9/10 (90.0) |
I am as healthy as anybody I know | 16 (100.0) | 15 (93.8) | 15 (93.8) | 11/15 (73.3) |
I expect my health to get worse | 16 (100.0) | 16 (100.0) | 16 (100.0) | 12/16 (75.0) |
My health is excellent | 16 (100.0) | 13 (81.3) | 13 (81.3) | 10/13 (76.9) |
Vitality | ||||
How much of the time during the past week did you… | ||||
Feel full of life | 16 (100.0) | 15 (93.8) | 15 (93.8) | 14/15 (93.3) |
Have a lot of energy | 16 (100.0) | 16 (100.0) | 16 (100.0) | 14/16 (87.5) |
Feel worn out | 16 (100.0) | 16 (100.0) | 16 (100.0) | 16/16 (100.0) |
Feel tired | 16 (100.0) | 16 (100.0) | 15 (93.8) | 14/16 (87.5) |
Social functioning | ||||
During the past week… | ||||
To what extent has your physical health or emotional problems interfered with your normal social activities with family, friends, neighbors, or groups | 16 (100.0) | 15 (93.8) | 15 (93.8) | 15/15 (100.0) |
How much of the time has your physical health or emotional problems interfered with your social activities (like visiting with friends, relatives, etc.) | 16 (100.0) | 15 (93.8) | 15 (93.8) | 15/15 (100.0) |
Role—emotional | ||||
During the past week, how much of the time have you had any of the following problems with your work or other regular daily activities? | ||||
Cut down on the amount of time you spent on work or other activities as a result of any emotional problems (such as feeling depressed or anxious) | 16 (100.0) | 16 (100.0) | 14 (87.5) | 16/16 (100.0) |
Accomplished less than you would like as a result of any emotional problems (such as feeling depressed or anxious) | 16 (100.0) | 14 (87.5) | 13 (81.3) | 14/14 (100.0) |
Did work or other activities less carefully than usual as a result of any emotional problems (such as feeling depressed or anxious) | 14 (87.5) | 11 (68.8) | 10 (62.5) | 11/11 (100.0) |
Mental health | ||||
How much of the time during the past week have you… | ||||
Been very nervous | 16 (100.0) | 11 (68.8) | 10 (62.5) | 9/11 (81.8) |
Felt so down in the dumps that nothing could cheer you up | 16 (100.0) | 12 (75.0) | 12 (75.0) | 11/12 (91.7) |
Felt calm and peaceful | 16 (100.0) | 15 (93.8) | 14 (87.5) | 15/15 (100.0) |
Felt downhearted and depressed | 16 (100.0) | 16 (100.0) | 15 (93.8) | 15/16 (93.8) |
Been happy | 16 (100.0) | 14 (87.5) | 12 (75.0) | 13/14 (92.9) |
Change in health status over past week | ||||
Compared to one week ago, how would you rate your health in general now | 16 (100.0) | 16 (100.0) | 13 (81.3) | 16/16 (100.0) |
Item comprehension
Relevance and importance
Domain/item | Exemplary quotes |
---|---|
Physical functioning | |
Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports | I answered yes, limited a lot. I did that because I can’t do any of those things, in general. My hypopara specifically, in reference to my health, I don’t run, I can’t lift heavy objects or do strenuous sports anyway, so yes, clearly, I’m limited. (109; female, age 36, works part-time, idiopathic HP) |
Role—physical | |
Were limited in the kind of work or other activities as a result of your physical health | I said a little of the time…Because I wanted to sit at my desk and do some writing and I couldn’t, because it felt like my legs were falling asleep when I was sitting, so I just laid down. (102; female, age 43, not working, post-surgical HP) |
Bodily pain | |
During the past week, how much did pain interfere with your normal work (including both work outside the home and housework)? | I would say quite a bit…the past week has been more stable than in some weeks and I did not experience tetany which would definitely change my answer. (116; female, age 54, retired, post-surgical HP) |
General health | |
In general, would you say your health is… | I took it as being in general my whole health situation. Some people may have more than one problem with their health and some may only have the hypopara situation…I'm looking at my general overall health and that hypopara, if somebody says, “So what are your problems,” hypopara is going to be the first or second answer. (108; female, age 62, retired, post-surgical HP) |
Vitality | |
Feel full of life | I don’t think that there is any week that I ever feel full of life because of hypopara in general and its effects and side-effects and how it affects my quality of life. I don’t think there is ever a day where I feel full of life. (109; female, age 36, works part-time, idiopathic HP) |
Social functioning | |
How much of the time has your physical health or emotional problems interfered with your social activities (like visiting with friends, relatives, etc.) | I would say most of the time, just because…when you have anxiety and depression, and just hypopara in general, you're managing your calcium levels, you tend to avoid a lot of friends and kind of stick to yourself like an introvert. (101; male, age 29, works full-time, idiopathic HP) |
Role—emotional | |
Accomplished less than you would like as a result of any emotional problems (such as feeling depressed or anxious) | Participant: Most of the time, again, the anxiety is so severe that it makes me where I just struggle to successfully do activities or complete tasks that needs to be done. Interviewer: Is this question relevant to your hypopara? Participant: Yes. (115; female, age 41, not working, post-surgical HP) |
Mental health | |
Felt so down in the dumps that nothing could cheer you up | I put a little of the time…So, yes, the depression that comes with the hypopara, too. (103; male, age 62, retired, post-surgical HP) |
Sensitivity to change
Response option comprehension
Frequency distribution of item responses
Total (n = 16) | |||
---|---|---|---|
Domain/item | Range of responses chosen | Floor, n (%) | Ceiling, n (%) |
Physical functioning | |||
Does your health now limit you in… | |||
Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports | Yes, limited a lot to Yes, limited a little | 8 (50.0) | 0 (0) |
Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling, or playing golf | Yes, limited a lot to No, not limited at all | 8 (50.0) | 3 (18.8) |
Lifting or carrying groceries | Yes, limited a lot to No, not limited at all | 2 (12.5) | 9 (56.3) |
Climbing several flights of stairs | Yes, limited a lot to No, not limited at all | 8 (50.0) | 4 (25.0) |
Climbing one flight of stairs | Yes, limited a lot to No, not limited at all | 2 (12.5) | 6 (37.5) |
Bending, kneeling, or stooping | Yes, limited a lot to No, not limited at all | 3 (18.8) | 8 (50.0) |
Walking more than a mile | Yes, limited a lot to No, not limited at all | 9 (56.3) | 4 (25.0) |
Walking several hundred yards | Yes, limited a lot to No, not limited at all | 3 (18.8) | 8 (50.0) |
Walking one hundred yards | Yes, limited a lot to No, not limited at all | 2 (12.5) | 12 (75.0) |
Bathing or dressing yourself | Yes, limited a little to No, not limited at all | 0 (0) | 11 (68.8) |
Role—physical | |||
During the past week, how much of the time have you had any of the following problems with your work or other regular daily activities? | |||
Cut down on the amount of time you spent on work or other activities as result of your physical health | All of the time to A little of the time | 1 (6.3) | 0 (0) |
Accomplished less than you would like as a result of your physical health | All of the time to None of the time | 4 (25.0) | 1 (6.3) |
Were limited in the kind of work or other activities as a result of your physical health | All of the time to None of the time | 4 (25.0) | 2 (12.5) |
Had difficulty performing the work or other activities as a result of your physical health (for example, it took extra effort) | All of the time to A little of the time | 1 (6.3) | 0 (0) |
Bodily pain | |||
How much bodily pain have you had during the past week | Very severe to Very mild | 2 (12.5) | 0 (0) |
During the past week, how much did pain interfere with your normal work (including both work outside the home and housework) | Extremely to Not at all | 2 (12.5) | 2 (12.5) |
General health | |||
In general, would you say your health is… | Poor to Excellent | 1 (6.3) | 1 (6.3) |
How TRUE or FALSE is the following statement for you? | |||
I seem to get sick a little easier than other people | Definitely true to Definitely false | 5 (31.3) | 3 (18.8) |
I am as healthy as anybody I know | Definitely false to Definitely true | 8 (50.0) | 1 (6.3) |
I expect my health to get worse | Definitely true to Mostly false | 2 (12.5) | 0 (0) |
My health is excellent | Definitely false to Definitely true | 9 (56.3) | 1 (6.3) |
Vitality | |||
How much of the time during the past week did you… | |||
Feel full of life | None of the time to Most of the time | 3 (18.8) | 0 (0) |
Have a lot of energy | None of the time to Most of the time | 4 (25.0) | 0 (0) |
Feel worn out | All of the time to Some of the time | 2 (12.5) | 0 (0) |
Feel tired | All of the time to Some of the time | 5 (31.3) | 0 (0) |
Social functioning | |||
During the past week… | |||
To what extent has your physical health or emotional problems interfered with your normal social activities with family, friends, neighbors, or groups | Quite a bit to Not at all | 0 (0) | 2 (12.5) |
How much of the time has your physical health or emotional problems interfered with your social activities (like visiting with friends, relatives, etc.) | All of the time to None of the time | 2 (12.5) | 2 (12.5) |
Role—emotional | |||
During the past week, how much of the time have you had any of the following problems with your work or other regular daily activities? | |||
Cut down on the amount of time you spent on work or other activities as a result of any emotional problems (such as feeling depressed or anxious) | Most of the time to None of the time | 0 (0) | 4 (25.0) |
Accomplished less than you would like as a result of any emotional problems (such as feeling depressed or anxious) | Most of the time to None of the time | 0 (0) | 6 (37.5) |
Did work or other activities less carefully than usual as a result of any emotional problems (such as feeling depressed or anxious) | Most of the time to None of the time | 0 (0) | 8 (50.0) |
Mental health | |||
How much of the time during the past week have you… | |||
Been very nervous | All of the time to None of the time | 1 (6.3) | 4 (25.0) |
Felt so down in the dumps that nothing could cheer you up | Some of the time to None of the time | 0 (0) | 8 (50.0) |
Felt calm and peaceful | Most of the time to None of the time | 2 (12.5) | 0 (0) |
Felt downhearted and depressed | Some of the time to None of the time | 0 (0) | 8 (50.0) |
Been happy | A little of the time to Most of the time | 0 (0) | 0 (0) |
Change in health status over past week | |||
Compared to one week ago, how would you rate your health in general now | About the same to Much better | 1 (6.3) | 0 (0) |