DOI: 10.5061/dryad.2z34tmpv8
title: Person-Centered Care (PCC) pilot cohort exploring longitudinal potential of USSD mechanism and optimal incentive level for HIV care experience survey response in Lusaka, Zambia 2018-2019

description: Background This pilot study evaluates the effectiveness of mobile
 talk-time incentives in promoting sustained participation in a
 longitudinal mHealth data collection program among people living with HIV
 in Lusaka, Zambia. With mobile device usage rapidly increasing in
 sub-Saharan Africa, mHealth tools, like mobile phone surveys, present an
 opportunity to capture vital health feedback and improve patient
 monitoring however, evidence on optimal incentive strategies to ensure
 long-term engagement remains limited. Understanding response patterns
 across multiple survey rounds, provides valuable insights into incentive
 strategies for long-term participation in mHealth programs within the
 context of expanding mobile access but prepaid billing and multi-SIM usage
 practices in Zambia and the broader sub-Saharan Africa (SSA) region.
 Objective Assess the response rate success across multiple invitations to
 participate in a care experience survey using a mobile phone short code
 and USSD model among individuals in an HIV care setting in the Lusaka
 Province of Zambia. Methods We enrolled study participants among
 individuals exiting two study clinics, one in a peri-urban setting and one
 in an urban setting. Two rounds of survey invitations were sent to those
 enrolled in the study. The first invitation was distributed between 1
 November 2018 and 25 June 2019 with the invitation to the second survey
 round following three months after the first (1 February 2019 to 23
 September 2019). Three incentive levels were randomly assigned by
 participant and survey round 1) no incentive, 2) two Zambian Kwacha (ZMW)
 (~0.16 USD), and 3) five ZMW (~0.42 USD). We assessed the association
 between incentive and response to the survey using a mixed effects Poisson
 regression model allowing random effects at the individual and facility
 level. Probability plots for survey completion were generated based on
 language, incentive level, and survey round. We projected the cost per
 additional response for different incentive levels. Results A total of
 1,006 participants were enrolled of which 72.1% occurred in the urban HIV
 care facility and 62.2% requested survey be sent in English. We sent a
 total of 1,992 survey invitations for both rounds. Overall, survey
 completion across both surveys was 32.1%, with significantly different
 response rates between the first (40.5%, 95% confidence interval [CI]:
 37.4, 43.6%) and second (23.7%, 95% CI: 21.1, 26.4%) invitations.
 Implementing a 5 ZMW incentive significantly increased adjusted prevalence
 ratio (aPR) for survey completion compared to those that received no
 incentive (aPR: 1.35; 95% CI: (1.11, 1.63). The cost per additional
 response highest at 5 ZMW (72.8 ZMW).  Conclusion We observed a
 sharp decline of almost fifty percent in survey completion success from
 initial invitation to follow-up survey administered three months later.
 This substantial decrease suggests that longitudinal data collection
 potential for a care experience survey may be limited without additional
 sensitization and/or survey reminders. Implementing a moderate incentive
 increased response rates to our healthcare experience survey. Tailoring
 survey strategies to accommodate language preferences and providing
 moderate incentives can optimize response rates in Zambia.
description: <em>Recruitment procedure</em>
 Potential survey participants were identified by research
 assistants at one of two (one in an urban setting, one in a peri-urban
 setting) pilot study HIV care facilities using convenience sampling
 following reception and triage procedures including routine data
 collection (e.g., temperature, weight, and blood pressure). Eligibility
 for study participation was limited to individuals who were enrolled as a
 recipient of care at the study facility, were aged 18 years or older,
 self-reported as literate in one of four survey languages, possessed a
 mobile phone during enrollment, and voluntarily consented to participate
 in the study. We confirmed that the mobile phone number reported by the
 potential participant belonged to the individual through a registration
 process using the unique PCPH short code, *744# on the potential
 participant’s phone at enrollment. The registration process confirmed
 ability to initiate and complete a USSD session, collected the language
 preference, and recorded the facility where the enrolment took
 place. <em>Data collection</em>
 Survey participants were presented with 4 questions related to
 their experience at their most recent HIV care visit. The opening question
 was the same for all participants, the next 3 questions were drawn, using
 a systematic algorithm, from a bank of 9 questions. Survey questions were
 subject to a cognitive interviewing process to increase acceptability,
 understanding, and appropriateness prior to piloting. At enrollment,
 participants selected their preferred survey language from English, Bemba
 spoken by 33.5% of the Zambian population, Nyanja, spoken by 14.8% of the
 Zambian population, or Tonga, spoken by 11.4% of the Zambian population.
 Only 2% of the population have English as the first language however,
 English is the most spoken second language.
description: # Person-centered care (PCC) - Unstructured Supplementary Service Data
 (USSD) HIV care experience survey in Lusaka, Zambia (2018-2019) ###
 (pcc\_pilot\_ussd\_incentive-17jun2024)
 [https://doi.org/10.5061/dryad.2z34tmpv8](https://doi.org/10.5061/dryad.2z34tmpv8) The Person-centered care (PCC) or, alternatively called the Person-Centered Public Health (PCPH), study was funded by the Bill and Melinda Gates Foundation (OPP1166485) and the NIAID K24 AI134413. The data here represent the pilot stage of the parent stepped wedge trial (Pan African Clinical Trial Registry number: PACTR202101847907585) designed to improve HIV the HIV care experience through healthcare worker mentorship and support as well as establishing a care feedback mechanism/measure. The unstructured supplementary service data (USSD) was developed as one such mechanism to capture HIV care experience. The primary use for this data initially was to identify the best incentive level to optimize response rate among enrolled participants. Because we were able to send multiple invitations (via short message service [SMS]) to participate through the USSD portal we evaluated the potential for a mobile health (mHealth) platform like this one to collect data longitudinally. Main effects of the PCC/PCPH study are in review at The Lancet HIV and analyses using the data presented here have been accepted to the Journal of Medical Internal Research (JMIR - [here](https://preprints.jmir.org/preprint/54304/accepted)).  ## Description of the data and file structure Data required to replicate the results published in the JMIR paper are presented here as a comma separated value (csv) file. The codebook has been prepared to clarify variable meaning/definitions applied. Missing data/blank cells represent missing data. Study participant identifiers are used to maintain anonymity of the participants. ### Codebook **Variables (n=9):**  1\) *round* Description: Round of survey Type: Numeric (byte) Range: [1,2]                         Units: 1 Unique values: 2                         Missing .: 0/2,012 Tabulation: Freq.  Value 1,006  1 1,006  2   2\) *study_id* Description: Study identifier Type: String (str10) Unique values: 1,006                     Missing "": 0/2,012 Examples: "01-11-8248" "02-11-2436" "02-11-4926" "02-11-7692"   3\) *language* Description: Survey language chosen upon study enrollment and phone number confirmation Type: Numeric (byte) Label: language Range: [1,4]                         Units: 1 Unique values: 4                         Missing .: 0/2,012 Tabulation: Freq.   Numeric  Label 1,256         1  English 526         2  Nyanja 204         3  Bemba 26         4  Tonga   4\) *confirmed* Description: Participant confirmed telephone number Type: String (str4) Unique values: 1                         Missing "": 0/2,012 Tabulation: Freq.  Value 2,012  "Yes" Warning: Variable has leading blanks.   5\) *incentive* Description: Airtime incentive alloted Type: Numeric (float) Label: incentive Range: [1,4]                         Units: 1 Unique values: 4                         Missing .: 0/2,012 Tabulation: Freq. Numeric  Label 693         1  0 ZMW 648         2  2 ZMW 651         3  5 ZMW 20         4  20 ZMW   6\) *month* Description: Month of survey Type: Numeric (float) Range: [1,12]                        Units: 1 Unique values: 12                        Missing .: 0/2,012 Mean: 5.13121 Std. dev.: 3.35422 Percentiles: 10%       25%       50%       75%       90% 2         2         4         7        11   7\) year Description: Year of survey Type: Numeric (float) Range: [2018,2019]                   Units: 1 Unique values: 2                         Missing .: 0/2,012 Tabulation: Freq.  Value 342  2018 1,670  2019   8\) *facility_encoded* Description: Study facility Type: Numeric (long) Label: facility_encoded, but label does not exist Range: [1,2]                         Units: 1 Unique values: 2                         Missing .: 0/2,012 Tabulation: Freq.  Value 558  1 1,454  2   9\) *status* Description: Survey response status Type: Numeric (float) Label: status Range: [0,2]                         Units: 1 Unique values: 3                         Missing .: 0/2,012 Tabulation: Freq.   Numeric  Label 1,144         0  No Response 645         1  Completed 223         2  Pending ## Sharing/Access information n/a ## Code/Software Data were initially reviewed and process using Stata 18 (Stata Corp LLC, College Station, TX, USA). PCC/PCHCP USSD Dataset Codebook 02 October 2024